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Archive for the ‘Patient Outlook’ Category


Reporter: Gail S. Thornton, M.A.

By USHA LEE MCFARLING

JULY 21, 2020

When dermatologist Jenna Lester learned that rashes on skin and toes were a symptom of Covid-19, she started searching the medical literature for images of what the rashes looked like on Black skin so she’d recognize it in her Black patients. She couldn’t find a single picture.

“I was frustrated because we know Covid-19 is disproportionately impacting communities of color,” said Lester, an assistant professor of dermatology at the University of California, San Francisco who recently published her analysis. “I felt like I was seeing a disparity being built right before my eyes.”

The dearth of images in the Covid-19 literature is just the newest example of the glaring lack of representation of Black and brown skin that has persisted in dermatology research journals and textbooks for decades. The issue is coming under closer scrutiny now as dermatologists, like many physicians, grapple more openly with systemic racism and the health disparities it is causing in their field.

 

“Black Lives Matter is forcing a lot of people to look inward and say, ‘Where are our shortcomings?’” said Nada Elbuluk, an associate professor of clinical dermatology at the University of Southern California and the founder of a diversity and inclusion program in her department. “Dermatology is no different.”

 

 

The discrimination in her specialty extends beyond images and gaps in training, to restrictive insurance coverage for skin conditions that affect people with heavily pigmented skin, and to the many dermatologists who don’t accept patients with Medicaid.

 

It may be no surprise that a field that focuses on skin is now reckoning with skin color. In dermatology, where images are critical for diagnoses, the lack of images of darker skin poses a roadblock to proper treatment and medical education. Skin conditions that involve redness or pinkness in light skin can be subtler or harder to see in dark skin, and physicians who haven’t been adequately trained with such images are prone to misdiagnose people of color. “We absolutely need a diversity of images,” said Elbuluk.

An analysis of textbooks by Jules Lipoff, an assistant professor of clinical dermatology at the University of Pennsylvania, showed the percentage of images of dark skin ranged from 4% to 18%. “We are not teaching (and possibly not learning) skin of color,” Lester wrote in a separate analysis she conducted. Many worry the field’s shift toward using artificial intelligence to aid diagnosis of disease will further deepen the divide, because the machine learning algorithms are trained with datasets consisting primarily of fair-skinned images.

Dr. Jenna Lester w/ patient
Dermatologist Jenna Lester treats Geoffry Blair Hutto at the UCSF skin of color clinic.COURTESY BARBARA RIES, UCSF

It gets worse. While many textbooks depict the vast majority of skin diseases using light skin, there is one notable exception: Black skin is more often used to depict sexually transmitted diseases, a glaring example of stereotyping that is all the more painful given the U.S. government’s complicity in the notorious Tuskegee experiments that left syphilis untreated for decades in a group of poor, Black men.

Lipoff’s analysis, published this year, showed many dermatology textbooks had zero images of dark skin with acne, psoriasis, or dermatitis. When it came to syphilis, however, many books relied heavily on images of dark skin. Lester’s analysis found that while 28% of images of infectious diseases used images of darker skin, the number of depictions of dark skin was twice as high for infections that were sexually transmitted.

“In the textbooks I used in medical school, every penis was a Black penis showing an STD. We’ve got to stop that,” said Susan Taylor, a pioneer in the push for better dermatologic care for patients with dark skin and the Sandra Lazarus professor of dermatology at the Perelman School of Medicine at the University of Pennsylvania.

Considered a trailblazer in the field of dermatology, Taylor established the nation’s first “Skin of Color” dermatology clinic at Mount Sinai in New York in the late 1990s. In 2004, she founded the Skin of Color Society to help educate fellow dermatologists about how to treat patients of color, push for research and clinical trials to include people with darker skin, and mentor and encourage medical students of color to enter dermatology, where only 3% of practitioners are Black and 4% are Hispanic. “These are really abysmal numbers,” Taylor said. “That’s got to change.”

Taylor is also the lead author of the textbook Dermatology for Skin of Color, a guide considered invaluable by many dermatologists. But even those who rely on the book say it’s frustrating that a separate book on dark skin is still required — when as a nation we are just a few decades away from a majority of residents having skin of color.

“This is the white patient treated as the default and the Black patient as the asterisk,” said Lipoff. “You can’t make skin of color a lecture that students get once a year. It can’t be ‘otherized’ or put in a separate textbook.”

Taylor agrees. “Nothing would make me happier than to not have to publish another edition of that book,” she said.

 

Dermatologists say the lack of images is one reason why many conditions, including Lyme disease, spider bites, and cancers can go misdiagnosed or underdiagnosed in darker skinned patients, sometimes with dangerous results. The five-year melanoma survival rate for Black patients is just 70% compared with 94% for white patients.

The mother of a mixed-race 13-year-old from Connecticut said she was told by her child’s pediatrician when she was 8 that the white patches on her skin were pityriasis alba, a skin rash that’s usually not considered a serious condition. She was given a lotion, but the skin patches never went away. “I kept going online and looking at things but I couldn’t see anyone with issues that looked like hers,” said the mother, who didn’t want her name used to protect the girl’s privacy. “And the doctor was casual about it.”

Partly because of insurance issues, and partly because the mother thought there was nothing to worry about, it took five years before her daughter’s white patches were properly diagnosed: She had T-cell lymphoma, a cancer. While she will require maintenance light therapy for life, her overall prognosis is good. But her case highlights the difficult and sometimes frightening challenge many patients of color face to get a proper dermatologic diagnosis.

“Black Lives Matter is forcing a lot of people to look inward and say, ‘Where are our shortcomings?’ Dermatology is no different.”

 

When Ellen Buchanan Weiss noticed patches on the dark brown skin of her toddler son, she wondered if it was eczema, or something more serious. “I Googled it and noticed immediately the pictures were all of white skin,” she said. “I Googled other conditions and it was the same. No matter what I searched, there were almost no images of dark skin.”

The patches did turn out to be eczema and were easily treated. Still, the disparity bothered her for months. About a year ago, Weiss, a stay-at-home mom in Raleigh, N.C., decided to create an Instagram account called “Brown Skin Matters.” She posted images of skin conditions in darker skin next to images of the same condition in white skin and asked followers to send in more photos. The account exploded almost immediately.

“I’ve had tons of medical schools, physicians, nurses, and pharmacists all contact me saying this was useful,” she said. “I never thought this was going to become a diagnostic tool.”

Instagram is not exactly the best platform for making medical diagnoses, so Weiss is now working with medical experts to help create a more rigorous and searchable web-based tool for diagnosis of skin diseases in darker skin. It still floors Weiss that she, a person with no medical background, is at the center of it. “It’s curious to me, and troubling, that this is 2020 and this gap is still here,” she said. “Some large medical institution should have been taking care of this, not me.”

atopic dermatitis in infants
Comparison of atopic dermatitis in infants with darkly pigmented versus lightly pigmented skin, from the widely used textbook, Dermatology.COURTESY BOLOGNIA JL, SCHAFFER JV, AND CERRONI L, EDS. DERMATOLOGY. 4TH ED. ELSEVIER

Bolognia said she is extremely sensitive about not stigmatizing people of color by using only images of darkly pigmented skin to illustrate sexually transmitted diseases or drug users. “I noticed this as a student, the images of STDs were nearly all of patients with darkly pigmented skin, but the people I saw with syphilis were often fair-skinned,” she said. “I wondered about the possibility that pictures were being taken of individuals who were less likely to say no.”

The issue of textbooks failing to adequately represent skin of color is not a new one. Yet Lipoff’s study compared today’s textbooks with those of 15 years ago and found little has changed. Jean Bolognia, a professor of dermatology at the Yale School of Medicine, has spent more than two decades editing the widely used textbook, Dermatology; she said providing a wide spectrum of skin tones is critical and something she’s worked hard to include, though she acknowledged there’s more work to do.

“I’m not saying it’s perfect, but we’ve been working really hard for over 15 years to show the whole spectrum,” said Bolognia, who is now working on the fifth edition of the textbook. “I feel you can always do better and I realize I don’t have enough images of Asian skin, so that is something I’m addressing.”Related: 

The field’s other widely used textbook is Andrews’ Diseases of the Skin. That book’s lead author, William James, is a longtime champion of diversity in dermatology, according to his colleagues at Penn, who include Taylor and Lipoff. James said representing a variety of skin tones was an important issue, but said authors were challenged by limits placed on the number of photos by textbook publishers and because findings of redness or pinkness can be hard to see in images of darker skin. “Deciding if an entity is represented at all, or more than once, is always difficult,” he said in an email.

James said his textbook includes more photos of Black skin than white skin in conditions that are more common in Black patients, and noted that eight of 14 photos of syphilis are in lighter skin.

Agrowing number of dermatologists are following Taylor’s lead and opening skin of color clinics that provide care for darker-skinned patients. Lester opened one at UCSF last year. Elbuluk has worked at or founded three skin of color clinics throughout her training and early career, including at Penn, NYU Medical School, and, in 2018, at USC, where she hopes to also spur much-needed clinical research on darker skin. “It’s surprising to me when large cities don’t have these,” Elbuluk said.

There are many reasons why people of color, particularly those who do not have private health insurance, lack access to dermatologists. Lipoff, who has examined the issue, said many dermatologists do not take Medicaid. Racial bias that discourages the treatment of Black patients, he said, is literally built into the physician reimbursement system. Many conditions that affect darker skin are often not covered by insurance because they are considered cosmetic.

Meanwhile, the highest revenue procedures, Lipoff said, include those for the diagnosis and treatment of skin cancer, which is more likely to occur in white patients. This difference in how procedures are valued and reimbursed, he said, is a perfect example of structural racism that drives practices to directly and indirectly focus on white patients and marginalize Black patients. “If Black patients earned practices three times the revenue,” he said, “the disparity would disappear overnight.”

“It’s curious to me, and troubling, that this is 2020 and this gap is still here. Some large medical institution should have been taking care of this, not me.”

 

Until it does, physicians who run skin of color clinics are hoping to address the lack of care, and poor care, Black and brown patients have received. The clinics are a welcome addition to people like Dar Bray, a 45-year-old behavioral therapist and darker-skinned Black man from Los Angeles.

Bray had dealt for years with deep and persistent scars caused by acne, trying bleaching creams and expensive cosmetic products, all with no success. “I went to so many doctors who didn’t know what to do with my skin. All the pictures they had on their wall were fair-skinned people,” Bray said. “It didn’t feel like racism, it felt like just plain ignorance.”

Seeing Elbuluk, he said, was immediately different. Bray is now undergoing chemical peels to remove scarring and using simple (and inexpensive) cleansers and moisturizers, and says he sees a huge improvement in his skin. He’s also wearing sunscreen, something no physician had ever told him was necessary; like many, he had believed the myth “Black don’t crack.” “When I went to the beach, I never wore sunscreen,” he said. “Now I have years of sun damage.”

Mistrust of white physicians led Gregory Hines, a 63-year-old longshoreman who lives in Oakland, to go years without seeing a doctor about growths under his arm, on his back, and on his neck, even as they puffed up and became, in his words “kind of weird and ugly.”

“I experience it a lot, going to doctors — especially white, male doctors — they assume they know more than you. They assume they already know what your problem is the minute you walk through the door,” he said.

When he heard UCSF’s Skin of Color clinic had opened, he was willing to give it a try. “When Dr. Lester walked in, I said, ‘Whoa, this is great,’” he said. “I wanted a Black doctor who understands Black skin.”

Lester ended up removing the masses, one of which was nearly as large as a golf ball, and sent them for tests to see if they were cancerous. Fortunately, they were not.

Lester is the only Black dermatologist in San Francisco. She’s hoping that will change after her current crop of residents decides where they will establish their practices. Her Black patients, she said, are often shocked when she walks in the door.

“I’ve had patients ask if they can take a picture with me to show their grandkids,” she said. “They want to talk all about me and how I got here, and I have to say, ‘No, this time is for you.’”

SOURCE

:https://www.statnews.com/2020/07/21/dermatology-faces-reckoning-lack-of-darker-skin-in-textbooks-journals-harms-patients-of-color/?utm_source=STAT+Newsletters

 

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Live Notes and Conference Coverage in Real Time. COVID19 And The Impact on Cancer Patients Town Hall with Leading Oncologists; April 4, 2020 


Live Notes and Conference Coverage in Real Time. COVID19 And The Impact on Cancer Patients Town Hall with Leading Oncologists; April 4, 2020

Reporter: Stephen J. Williams, PhD 

@StephenJWillia2

UPDATED 5/11/2020 see below

This update is the video from the COVID-19 Series 4.

UPDATED 4/08/2020 see below

The Second in a Series of Virtual Town Halls with Leading Oncologist on Cancer Patient Care during COVID-19 Pandemic: What you need to know

The second virtual Town Hall with Leading International Oncologist, discussing the impact that the worldwide COVID-19 outbreak has on cancer care and patient care issues will be held this Saturday April 4, 2020.  This Town Hall Series is led by Dr. Roy Herbst and Dr. Hossain Borghaei who will present a panel of experts to discuss issues pertaining to oncology practice as well as addressing physicians and patients concerns surrounding the risk COVID-19 presents to cancer care.  Some speakers on the panel represent oncologist from France and Italy, and will give their views of the situation in these countries.

 

Speakers include:

Roy S. Herbst, MD, PhD, Ensign Professor of Medicine (Medical Oncology) and Professor of Pharmacology; Chief of Medical Oncology, Yale Cancer Center and Smilow Cancer Hospital; Associate Cancer Center Director for Translational Research, Yale Cancer Center

Hossain Borghaei, DO, MS , Chief of Thoracic Medical Oncology and Director of Lung Cancer Risk Assessment, Fox Chase Cancer Center

Giuseppe Curigliano, MD, PhD, University of Milan and Head of Phase I Division at IEO, European Institute of Oncology

Paolo Ascierto, MD National Tumor Institute Fondazione G. Pascale, Medical oncologist from National Cancer Institute of Naples, Italy

Fabrice Barlesi, MD, PhD, Thoracic oncologist Cofounder Marseille Immunopole Coordinator #ThePioneeRproject, Institut Gustave Roussy

Jack West, MD, Department of Medical Oncology & Therapeutics Research, City of Hope California

Rohit Kumar, MD Department of Medicine, Section of Pulmonary Medicine, Fox Chase Cancer Center

Christopher Manley, MD Director, Interventional Pulmonology Fox Chase Cancer Center

Hope Rugo, MD FASCO Division of Hematology and Oncology, University of California San Francisco (UCSF) Helen Diller Family Comprehensive Cancer Center

Harriet Kluger, MD Professor of Medicine (Medical Oncology); Director, Yale SPORE in Skin Cancer, Yale Cancer Center

Marianne J. Davies, DNP, MSN, RN, APRN, CNS-BC, ACNP-BC, AOCNP Assistant Professor of Nursing, Yale University

Barbara Burtness, MD Professor of Medicine (Medical Oncology);  Head and Neck Cancers Program, Yale University

 

@pharma_BI and @StephenJWillia2 will be Tweeting out live notes using #CancerCareandCOVID19

Live Notes

Part I: Practice Management

Dr. Jack West from City of Hope talked about telemedicine:  Coordination of the patient experience, which used to be face to face now moved to a telemedicine alternative.  For example a patient doing well on personalized therapy, many patients are well suited for a telemedicine experience.  A benefit for both patient and physician.

Dr. Rohit Kumar: In small cancer hospitals, can be a bit difficult to determine which patient needs to come in and which do not.  For outpatients testing for COVID is becoming very pertinent as these tests need to come back faster than it is currently.  For inpatients the issue is personal protection equipment.  They are starting to reuse masks after sterilization with dry heat.   Best to restructure the system of seeing patients and scheduling procedures.

Dr. Christopher Manley: hypoxia was an issue for COVID19 patients but seeing GI symptoms in 5% of patients.  Nebulizers have potential to aerosolize.  For patients in surgery prep room surgical masks are fine.  Ventilating these patients are a challenge as hypoxia a problem.  Myocarditis is a problem in some patients.  Diffuse encephalopathy and kidney problems are being seen. So Interleukin 6 (IL6) inhibitors are being used to reduce the cytokine storm presented in patients suffering from COVID19.

Dr. Hope Rugo from UCSF: Breast cancer treatment during this pandemic has been challenging, even though they don’t use too much immuno-suppressive drugs.  How we decide on timing of therapy and future visits is crucial.  For early stage breast cancer, neoadjuvant therapy is being used to delay surgeries.  Endocrine therapy is more often being used. In patients that need chemotherapy, they are using growth factor therapy according to current guidelines.  Although that growth factor therapy might antagonize some lung problems, there is less need for multiple visits.

For metastatic breast cancer,  high risk ER positive are receiving endocrine therapy and using telemedicine for followups.  For chemotherapy they are trying to reduce the schedules or frequency it is given. Clinical trials have been put on hold, mostly pharmokinetic studies are hard to carry out unless patients can come in, so as they are limiting patient visits they are putting these type of clinical studies on hold.

Dr. Harriet Kluger:  Melanoma community of oncologists gathered together two weeks ago to discuss guidelines and best practices during this pandemic.   The discussed that there is a lack of data on immunotherapy long term benefit and don’t know the effectiveness of neoadjuvant therapy.  She noted that many patients on BRAF inhibitors like Taflinar (dabrafenib)   or Zelboraf (vemurafenib) might get fevers as a side effect from these inhibitors and telling them to just monitor themselves and get tested if they want. Yale has also instituted a practice that, if a patient tests positive for COVID19, Yale wants 24 hours between the next patient visit to limit spread and decontaminate.

Marianne Davies:  Blood work is now being done at satellite sites to limit number of in person visits to Yale.  Usually they did biopsies to determine resistance to therapy but now relying on liquid biopsies (if insurance isn’t covering it they are working with patient to assist).  For mesothelioma they are dropping chemotherapy that is very immunosuppressive and going with maintenance pembrolizumab (Keytruda).  It is challenging in that COPD mimics the symptoms of COVID and patients are finding it difficult to get nebulizers at the pharmacy because of shortages; these patients that develop COPD are also worried they will not get the respirators they need because of rationing.

Dr. Barbara Burtness: Head and neck cancer.  Dr. Burtness stresses to patients that the survival rate now for HPV positive head and neck is much better and leaves patients with extra information on their individual cancers.  She also noted a registry or database that is being formed to track data on COVID in patients undergoing surgery  and can be found here at https://globalsurg.org/covidsurg/

About CovidSurg

  • There is an urgent need to understand the outcomes of COVID-19 infected patients who undergo surgery.
  • Capturing real-world data and sharing international experience will inform the management of this complex group of patients who undergo surgery throughout the COVID-19 pandemic, improving their clinical care.
  • CovidSurg has been designed by an international collaborating group of surgeons and anesthetists, with representation from Canada, China, Germany, Hong Kong, Italy, Korea, Singapore, Spain, United Kingdom, and the United States.

Dr. Burtness had noted that healthcare care workers are at high risk of COVID exposure during ear nose and throat (ENT) procedures as the coronavirus resides in the upper respiratory tract.  As for therapy for head and neck cancers, they are staying away from high dose cisplatin because of the nephrotoxicity seen with high dose cisplatin.  An alternative is carboplatin which generally you do not see nephrotoxicity as an adverse event (a weekly carboplatin).  Changing or increasing dose schedule (like 6 weeks Keytruda) helps reduce immunologic problems related to immunosupression and patients do not have to come in as often.

Italy and France

Dr. Paolo Ascierto:   with braf inhibitors, using in tablet form so patients can take from home.  Also they are moving chemo schedules for inpatients so longer dosing schedules.  Fever still a side effect from braf inhibitors and they require a swab to be performed to ascertain patient is COVID19 negative.  Also seeing pneumonitis as this is an adverse event from checkpoint inhibitors so looking at CT scans and nasal swab to determine if just side effect of I/O drugs or a COVID19 case.  He mentioned that their area is now doing okay with resources.

Dr. Guiseppe Curigliano mentioned about the redesign of the Italian health system with spokes and hubs of health care.  Spokes are generalized medicine while the hubs represent more specialized centers like CV hubs or cancer hubs.  So for instance, if a melanoma patient in a spoke area with COVID cases they will be referred to a hub.  He says they are doing better in his area

In the question and answer period, Dr. West mentioned that they are relaxing many HIPAA regulations concerning telemedicine.  There is a website on the Centers for Connective Health Policy that shows state by state policy on conducting telemedicine.   On immuno oncology therapy, many in the panel had many questions concerning the long term risk to COVID associated with this type of therapy.  Fabrice mentioned they try to postpone use of I/O and although Dr. Kluger said there was an idea floating around that PD1/PDL1 inhibitors could be used as a prophylactic agent more data was needed.

Please revisit this page as the recording of this Town Hall will be made available next week.

UPDATED 4/08/2020

Below find the LIVE RECORDING and TAKEAWAYS by the speakers

 

 
Town Hall Takeaways
 

Utilize Telehealth to Its Fullest Benefit

 

·       Patients doing well on targeted therapy or routine surveillance are well suited to telemedicine

·       Most patients are amenable to this, as it is more convenient for them and minimizes their exposure

·       A patient can speak to multiple specialists with an ease that was not previously possible

·       CMS has relaxed some rules to accommodate telehealth, though private insurers have not moved as quickly, and the Center for Connected Health Policy maintains a repository of current state-by-state regulations:  https://www.cchpca.org/

 

Practice Management Strategies

 

·       In the face of PPE shortages, N95 masks can be decontaminated using UV light, hydrogen peroxide, or autoclaving with dry heat; the masks can be returned to the original user until the masks are no longer suitable for use

·       For blood work or scans, the use of external satellite facilities should be explored

·       Keep pumps outside of the room so nurses can attend to them quickly

·       Limit the use of nebulizers, CPAPs, and BiPAPs due to risk of aerosolization

 

Pool Our Knowledge for Care of COVID Patients

 

·       There is now a global registry for tracking surgeries in COVID-positive cancer patients:  https://globalsurg.org/cancercovidsurg/

·       Caution is urged in the presence of cardiac complications, as ventilated patients may appear to improve, only to suffer severe myocarditis and cardiac arrest following extubation

·       When the decision is made to intubate, intubate quickly, as less invasive methods result in aerosolization and increased risks to staff

 

Study the Lessons of Europe

 

·       The health care system in Italy has been reorganized into “spokes” and “hubs,” with a number of cancer hubs; if there is a cancer patient in a spoke hospital with many COVID patients, this patient may be referred to a hub hospital

·       Postpone adjuvant treatments whenever possible

·       Oral therapies, which can be managed at home, are preferred over therapies that must be administered in a healthcare setting

·       Pneumonitis patients without fevers may be treated with steroids, but nasal swab testing is needed in the presence of concomitant fever

·       Any staff who are not needed on site should be working from home, and rotating schedules can be used to keep people healthy

·       Devise an annual epidemic control plan now that we have new lessons from COVID

 

We Must Be Advocates for Our Cancer Patients

 

·       Be proactive with other healthcare providers on behalf of patients with a good prognosis

·       Consider writing letters for cancer patients for inclusion into their chart, or addendums on notes, then encourage patients to print these out, or give it to them during their visit

·       The potential exists for a patient to be physiologically stable on a ventilator, but intolerant of decannulation; early discussions are necessary to determine reasonable expectations of care

·       Be sure to anticipate a second wave of patients, comprised of cancer patients for whom treatments and surgery have been delayed!

 

Tumor-Specific Learnings

 

Ø  Strategies in Breast Cancer:

·       In patients with early-stage disease, promote the use of neoadjuvant therapy where possible to delay the need for surgery

·       For patients with metastatic disease in the palliative setting, transition to less frequent chemotherapy dosing if possible

·       While growth factors may pose a risk in interstitial lung disease, new guidelines are emerging

 

Ø  Strategies in Melanoma:

·       The melanoma community has released specific recommendations for treatment during the pandemic:  https://www.nccn.org/covid-19/pdf/Melanoma.pdf

·       The use of BRAF/MEK inhibitors can cause fevers that are drug-related, and access to an alternate clinic where patients can be assessed is a useful resource

 

Ø  Strategies in Lung Cancer:

·       For patients who are stable on an oral, targeted therapy, telehealth check-in is a good option

·       For patients who progress on targeted therapies, increased use of liquid biopsies when appropriate can minimize use of bronchoscopy suites and other resources

·       For patients on pembrolizumab monotherapy, consider switching to a six-week dosing of 400 mg

·       Many lung cancer patients worry about “discrimination” should they develop a COVID infection; it is important to support patients and help manage expectations and concerns

 

 

UPDATED 5/11/2020

Townhall on COVID-19 and Cancer Care with Leading Oncologists Series 4

Addressing the Challenges of Cancer Care in the Community

 

 

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Curation of Resources for High Risk People  to COVID-19 Infection :Guidances for Transplant Patients

Curator: Stephen J. Williams, PhD

 

From the American Society of Transplantation

Source: https://www.myast.org/information-transplant-professionals-and-community-members-regarding-2019-novel-coronavirus

INFORMATION FOR TRANSPLANT PROFESSIONALS AND COMMUNITY MEMBERS REGARDING 2019 NOVEL CORONAVIRUS

The recent outbreak of a novel coronavirus (COVID-19) in Wuhan, Hubei Province, China and the finding of infection in many other countries including the United States has led to questions among transplant programs, Organ Procurement Organizations (OPOs) and patients. The Organ Procurement and Transplantation Network (OPTN) strives to provide up-to-date information to answer these questions and to provide guidance as needed. Accordingly, the OPTN Ad Hoc Donor Transmission Advisory Committee (DTAC), American Society of Transplantation (AST) and the American Society of Transplant Surgeons (ASTS), after careful review of information available from the Centers for Disease Control and Prevention (CDC), offers information to transplant programs and OPOs in light of these concerns. Please visit the OPTN  website for more information.

The American Society of Transplantation recently conducted a Town Hall on guidances for transplant patients with regard to the COVID-19 pandemic.  A video recording of the Town Hall is given below

 

 

Description of the Town Hall by the AST: A number of transplant organizations from around the world have partnered to develop this educational webinar for the organ donation and transplantation communities. Our goal is to share experiences to date and respond to your questions about the impact of COVID-19 on organ donation and transplantation.

 

This webinar was recorded on March 23, 2020.

 

Resource Handout: https://www.myast.org/sites/default/f…

AST COVID-19 Page: https://www.myast.org/covid-19-inform…

 

The American Society of Transplantation has other up to date resources on their webpage at https://www.myast.org/covid-19-information#

AST Resources For Transplant Professionals 

Information for Transplant Professionals (Updated 3/31/20)

Medication Access and Drug Shortage Concerns During the COVID-19 Pandemic: Frequently Asked Questions (posted 3/31/20)

AST Resources For Transplant Recipients and Candidates 

Information for Transplant Recipients and Candidates (Updated 3/30/20)

Other Resources like videos and further articles

Frequently Asked Questions can be found here https://www.myast.org/coronavirus-disease-2019-covid-19-frequently-asked-questions-transplant-candidates-and-recipients

Mark Spigler from the American Kidney Fund listed some tips specifically for kidney transplant recipients. In his blog

Coronavirus, COVID-19 and kidney patients: what you need to know he wrote:

Because transplant recipients take immunosuppressive drugs, they are at higher risk of infection from viruses such as cold or flu. To limit the possibility of being exposed to the coronavirus that causes COVID-19, transplant patients should follow the CDC’s tips to avoid catching or spreading germs, and contact their health care provider if they develop cold or flu-like symptoms. By being informed and taking your own personal precautions, you can help reduce your risk of coming in contact with the coronavirus that causes COVID-19. You can find more information and resources for kidney patients by visiting our special coronavirus webpage at KidneyFund.org/coronavirus. We’ll update the page with important information for kidney patients and their caregivers as the coronavirus crisis continues to unfold.

Resources from the National Kidney Foundation

Source: https://www.kidney.org/coronavirus/transplant-coronavirus

Coronavirus and Kidney Transplants (please click on the links below)

For more information concerning various issues on COVID-19 please see our Coronavirus Portal at:

https://pharmaceuticalintelligence.com/coronavirus-portal/

 

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Live Notes from @HarvardMed Bioethics: Authors Jerome Groopman, MD & Pamela Hartzband, MD, discuss Your Medical Mind

Writer: Stephen J. Williams, Ph.D.

As part of the Harvard Medical School Series on Bioethics: author, clinician and professor Jerome Groopman, MD and Pamel Harzband, MD gave an online discussion of their book “Your Medical Mind”, a part of Harvard Medical School Center for Bioethics Program’s Critical Reading of Contemporary Books in Bioethics Series. The Contemporary Authors in Bioethics series brings together authors and the community to discuss books that explore new and developing topics in the field. This was held as an online Zoom meeting on March 26, 2020 at 5 pm EST and could be followed on Twitter using #HarvardBioethics.  A recording of the discussion will be made available at the Harvard Med School Center for Bioethics.

 

Available at Amazon: From the Amazon book description:

An entirely new way to make the best medical decisions.

Making the right medical decisions is harder than ever. We are overwhelmed by information from all sides—whether our doctors’ recommendations, dissenting experts, confusing statistics, or testimonials on the Internet. Now Doctors Groopman and Hartzband reveal that each of us has a “medical mind,” a highly individual approach to weighing the risks and benefits of treatments.  Are you a minimalist or a maximalist, a believer or a doubter, do you look for natural healing or the latest technology?  The authors weave vivid narratives of real patients with insights from recent research to demonstrate the power of the medical mind. After reading this groundbreaking book, you will know how to arrive at choices that serve you best.

 

Doctors Groopman and Hartzband began the discussion with a recapping medical research studies and medical panels, which had reported conflicting results or reversal of recommendations, respectively.  These included studies on the benefits of statin therapy in cholesterol management, studies on whether or not Vitamin D therapy is beneficial for postmenopausal women, the ongoing controversy on the frequency with which women should get mammograms, as well as the predictive value of Prostate Specific Antigen and prostate cancer screening.  The authors singled out the research reports and medical panels reviewing the data on PSA in which the same medical panel first came out in support of using PSA levels to screen for prostate cancer and then later, after reconvening, recommended that PSA was not useful for mass screenings for prostate cancer.

In fact, both authors were

completed surprised of the diametrically opposed views within or between panels given similar data presented to those medical professionals.

The authors then asked a question:  Why would the same medical panel come to a reversal of their decision and more, importantly,  why are there such disparate conclusions from the same medical data sets, leading to varied clinical decision-making.

In general, Drs. Groopman and Hartzband asked how do physicians and patients make their decisions?

To answer this they looked at studies that Daniel Bernouli had conducted to model the economic behaviors of risk aversion in the marketplace. Bernouli’s theorem correlated market expectation with probability and outcomes

expectation = probability x utility of outcome

However, in medicine, one can measure probability (or risk) but it is very hard to measure utility (which is the value or worth of the outcome).

For example, they gave an example if a person was born blind but offered a risky to regain sight, the individual values their quality of life from their own perspective and might feel that, as their life is worthwhile as it is, they would not undergo a risky procedure. However a person who had suddenly lost their sight might value sight more, and be willing to undergo a risky procedure.

Three methods are used to put a value on utility or outcome worth with regards to medical decisions

  1. linear scale (life or death; from 0 to 1)
  2. time trade off:  e.g. how much longer do I have to live
  3. standard gamble:  let’s try it

All of these methods however are flawed because one doesn’t know their future medical condition (e.g. new information on the disease) and people values and perceptions change over time.

An example of choice of methods the medical community uses to make decisions include:

  • In the United Kingdom, their system uses a time trade off method to determine value in order to determine appropriate course of action which may inadvertently, result in rationed care
  • in the United States, the medical community uses the time trade off to determine cost effectiveness

 

Therefore Drs. Groopman and Harztband, after conducing multiple interviews with patients and physicians were able to categorize medical decision making based on groups of mindsets

  1. Maximalist: Proactive behavior, wants to stay ahead of the curve
  2. Minimalist: less intervention is more; more hesitant to try any suggested therapy
  3. Naturalist:  more prone to choose natural based therapies or home remedies
  4. Tech Oriented: wants to try the latest therapies and more apt to trust in branded and FDA approved therapeutics
  5. Believer:  trust in suggestions by physician; physician trusts medical panels suggestions
  6. Doubter: naturally inquisitive and more prone to investigate risk benefits of any suggested therapy

The authors also identified many Cognitive Traps that both physicians and patients may fall into including:

  • Relative versus Absolute Numbers: for instance putting emphasis on one number or the other without regard to context; like looking at disease numbers without taking into consideration individual risk
  • Availability: availability or lack of available information; they noticed if you fall in this trap depends on whether you are a Minimalist or Maximalist
  • Framing:  for example  when people talk to others about their conditions and hear stories about others treatments, conditions .. mainly anecdotal evidence

Stories can be helpful but they sometimes increase our overestimation of risk or benefit so framing the information is very important for both the patient as well as the physician (even doctors as patients)

Both authors have noticed a big shift in US to minimalism probably because of the rising costs of healthcare.

How do these mindsets affect the patient-physician relationship?

A University of Michigan study revealed that patients who would be characterized as maximalists pushed their physicians to do more therapy and were more prone to seek outside advice.

Physicians need to understand and listen to their patients during the patients’s first visit and determine what medical mindset that this patient has.

About the authors:

Jerome Groopman, M.D. is the Dina and Raphael Recanati Professor of Medicine at Harvard Medical School, Chief of Experimental Medicine at Beth Israel Deaconess Medical Center, and one of the world’s leading researchers in cancer and AIDS. He is a staff writer for The New Yorker and has written for The New York TimesThe Wall Street Journal,The Washington Post and The New Republic. He is author of The Measure of Our Days (1997), Second Opinions (2000), Anatomy of Hope (2004), How Doctors Think (2007), and the recently released, Your Medical Mind.

Dr. Pamela Hartzband is an Assistant Professor at the Harvard Medical School and Attending Physician in the Division of Endocrinology at the Beth Israel Deaconess Medical Center in Boston. She specializes in disorders of the thyroid and pituitary glands. A magna cum laude graduate of Radcliffe College, Harvard University, she received her M.D. from Harvard Medical School. She served her internship and residency in internal medicine at the Massachusetts General Hospital, and her specialty fellowships in endocrinology and metabolism at UCLA.

More articles on BioEthics and Patient experiences in this Online Open Access Journal Include:

Ethics Behind Genetic Testing in Breast Cancer: A Webinar by Laura Carfang of survivingbreastcancer.org

Tweets and Re-Tweets by @Pharma_BI ‏and @AVIVA1950 at 2019 Petrie-Flom Center Annual Conference: Consuming Genetics: Ethical and Legal Considerations of New Technologies, Friday, May 17, 2019 from 8:00 AM to 5:00 PM EDT @Harvard_Law

Innovation + Technology = Good Patient Experience

Drivers of Patient Experience

Factors in Patient Experience

Patient Experience Survey

Please also see our offering on Amazon at https://www.amazon.com/dp/B076HGB6MZ

“The VOICES of Patients, Hospital CEOs, Health Care Providers, Caregivers and Families: Personal Experience with Critical Care and Invasive Medical Procedures,”

 

 

 

 

 

 

 

 

 

 

 

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US Responses to Coronavirus Outbreak Expose Many Flaws in Our Medical System


US Responses to Coronavirus Outbreak Expose Many Flaws in Our Medical System

Curator: Stephen J. Williams, Ph.D.

The  coronavirus pandemic has affected almost every country in every continent however, after months of the novel advent of novel COVID-19 cases, it has become apparent that the varied clinical responses in this epidemic (and outcomes) have laid bare some of the strong and weak aspects in, both our worldwide capabilities to respond to infectious outbreaks in a global coordinated response and in individual countries’ response to their localized epidemics.

 

Some nations, like Israel, have initiated a coordinated government-private-health system wide action plan and have shown success in limiting both new cases and COVID-19 related deaths.  After the initial Wuhan China outbreak, China closed borders and the government initiated health related procedures including the building of new hospitals. As of writing today, Wuhan has experienced no new cases of COVID-19 for two straight days.

 

However, the response in the US has been perplexing and has highlighted some glaring problems that have been augmented in this crisis, in the view of this writer.    In my view, which has been formulated after social discussion with members in the field ,these issues can be centered on three major areas of deficiencies in the United States that have hindered a rapid and successful response to this current crisis and potential future crises of this nature.

 

 

  1. The mistrust or misunderstanding of science in the United States
  2. Lack of communication and connection between patients and those involved in the healthcare industry
  3. Socio-geographical inequalities within the US healthcare system

 

1. The mistrust or misunderstanding of science in the United States

 

For the past decade, anyone involved in science, whether directly as active bench scientists, regulatory scientists, scientists involved in science and health policy, or environmental scientists can attest to the constant pressure to not only defend their profession but also to defend the entire scientific process and community from an onslaught of misinformation, mistrust and anxiety toward the field of science.  This can be seen in many of the editorials in scientific publications including the journal Science and Scientific American (as shown below)

 

Stepping Away from Microscopes, Thousands Protest War on Science

Boston rally coincides with annual American Association for the Advancement of Science (AAAS) conference and is a precursor to the March for Science in Washington, D.C.

byLauren McCauley, staff writer

Responding to the troubling suppression of science under the Trump administration, thousands of scientists, allies, and frontline communities are holding a rally in Boston’s Copley Square on Sunday.

#standupforscience Tweets

 

“Science serves the common good,” reads the call to action. “It protects the health of our communities, the safety of our families, the education of our children, the foundation of our economy and jobs, and the future we all want to live in and preserve for coming generations.”

It continues: 

But it’s under attack—both science itself, and the unalienable rights that scientists help uphold and protect. 

From the muzzling of scientists and government agencies, to the immigration ban, the deletion of scientific data, and the de-funding of public science, the erosion of our institutions of science is a dangerous direction for our country. Real people and communities bear the brunt of these actions.

The rally was planned to coincide with the annual American Association for the Advancement of Science (AAAS) conference, which draws thousands of science professionals, and is a precursor to the March for Science in Washington, D.C. and in cities around the world on April 22.

 

Source: https://www.commondreams.org/news/2017/02/19/stepping-away-microscopes-thousands-protest-war-science

https://images.app.goo.gl/UXizCsX4g5wZjVtz9

 

https://www.washingtonpost.com/video/c/embed/85438fbe-278d-11e7-928e-3624539060e8

 

 

The American Association for Cancer Research (AACR) also had marches for public awareness of science and meaningful science policy at their annual conference in Washington, D.C. in 2017 (see here for free recordings of some talks including Joe Biden’s announcement of the Cancer Moonshot program) and also sponsored events such as the Rally for Medical Research.  This patient advocacy effort is led by the cancer clinicians and scientific researchers to rally public support for cancer research for the benefit of those affected by the disease.

Source: https://leadingdiscoveries.aacr.org/cancer-patients-front-and-center/

 

 

     However, some feel that scientists are being too sensitive and that science policy and science-based decision making may not be under that much of a threat in this country. Yet even as some people think that there is no actual war on science and on scientists they realize that the public is not engaged in science and may not be sympathetic to the scientific process or trust scientists’ opinions. 

 

   

From Scientific American: Is There Really a War on Science? People who oppose vaccines, GMOs and climate change evidence may be more anxious than antagonistic

 

Certainly, opponents of genetically modified crops, vaccinations that are required for children and climate science have become louder and more organized in recent times. But opponents typically live in separate camps and protest single issues, not science as a whole, said science historian and philosopher Roberta Millstein of the University of California, Davis. She spoke at a standing-room only panel session at the American Association for the Advancement of Science’s annual meeting, held in Washington, D.C. All the speakers advocated for a scientifically informed citizenry and public policy, and most discouraged broadly applied battle-themed rhetoric.

 

Source: https://www.scientificamerican.com/article/is-there-really-a-war-on-science/

 

      In general, it appears to be a major misunderstanding by the public of the scientific process, and principles of scientific discovery, which may be the fault of miscommunication by scientists or agendas which have the goals of subverting or misdirecting public policy decisions from scientific discourse and investigation.

 

This can lead to an information vacuum, which, in this age of rapid social media communication,

can quickly perpetuate misinformation.

 

This perpetuation of misinformation was very evident in a Twitter feed discussion with Dr. Eric Topol, M.D. (cardiologist and Founder and Director of the Scripps Research Translational  Institute) on the US President’s tweet on the use of the antimalarial drug hydroxychloroquine based on President Trump referencing a single study in the International Journal of Antimicrobial Agents.  The Twitter thread became a sort of “scientific journal club” with input from international scientists discussing and critiquing the results in the paper.  

 

Please note that when we scientists CRITIQUE a paper it does not mean CRITICIZE it.  A critique is merely an in depth analysis of the results and conclusions with an open discussion on the paper.  This is part of the normal peer review process.

 

Below is the original Tweet by Dr. Eric Topol as well as the ensuing tweet thread

 

https://twitter.com/EricTopol/status/1241442247133900801?s=20

 

Within the tweet thread it was discussed some of the limitations or study design flaws of the referenced paper leading the scientists in this impromptu discussion that the study could not reasonably conclude that hydroxychloroquine was not a reliable therapeutic for this coronavirus strain.

 

The lesson: The public has to realize CRITIQUE does not mean CRITICISM.

 

Scientific discourse has to occur to allow for the proper critique of results.  When this is allowed science becomes better, more robust, and we protect ourselves from maybe heading down an incorrect path, which may have major impacts on a clinical outcome, in this case.

 

 

2.  Lack of communication and connection between patients and those involved in the healthcare industry

 

In normal times, it is imperative for the patient-physician relationship to be intact in order for the physician to be able to communicate proper information to their patient during and after therapy/care.  In these critical times, this relationship and good communication skills becomes even more important.

 

Recently, I have had multiple communications, either through Twitter, Facebook, and other social media outlets with cancer patients, cancer advocacy groups, and cancer survivorship forums concerning their risks of getting infected with the coronavirus and how they should handle various aspects of their therapy, whether they were currently undergoing therapy or just about to start chemotherapy.  This made me realize that there were a huge subset of patients who were not receiving all the information and support they needed; namely patients who are immunocompromised.

 

These are patients represent

  1. cancer patient undergoing/or about to start chemotherapy
  2. Patients taking immunosuppressive drugs: organ transplant recipients, patients with autoimmune diseases, multiple sclerosis patients
  3. Patients with immunodeficiency disorders

 

These concerns prompted me to write a posting curating the guidance from National Cancer Institute (NCI) designated cancer centers to cancer patients concerning their risk to COVID19 (which can be found here).

 

Surprisingly, there were only 14 of the 51 US NCI Cancer Centers which had posted guidance (either there own or from organizations like NCI or the National Cancer Coalition Network (NCCN).  Most of the guidance to patients had stemmed from a paper written by Dr. Markham of the Fred Hutchinson Cancer Center in Seattle Washington, the first major US city which was impacted by COVID19.

 

Also I was surprised at the reactions to this posting, with patients and oncologists enthusiastic to discuss concerns around the coronavirus problem.  This led to having additional contact with patients and oncologists who, as I was surprised, are not having these conversations with each other or are totally confused on courses of action during this pandemic.  There was a true need for each party, both patients/caregivers and physicians/oncologists to be able to communicate with each other and disseminate good information.

 

Last night there was a Tweet conversation on Twitter #OTChat sponsored by @OncologyTimes.  A few tweets are included below

https://twitter.com/OncologyTimes/status/1242611841613864960?s=20

https://twitter.com/OncologyTimes/status/1242616756658753538?s=20

https://twitter.com/OncologyTimes/status/1242615906846547978?s=20

 

The Lesson:  Rapid Communication of Vital Information in times of stress is crucial in maintaining a good patient/physician relationship and preventing Misinformation.

 

3.  Socio-geographical Inequalities in the US Healthcare System

It has become very clear that the US healthcare system is fractioned and multiple inequalities (based on race, sex, geography, socio-economic status, age) exist across the whole healthcare system.  These inequalities are exacerbated in times of stress, especially when access to care is limited.

 

An example:

 

On May 12, 2015, an Amtrak Northeast Regional train from Washington, D.C. bound for New York City derailed and wrecked on the Northeast Corridor in the Port Richmond neighborhood of Philadelphia, Pennsylvania. Of 238 passengers and 5 crew on board, 8 were killed and over 200 injured, 11 critically. The train was traveling at 102 mph (164 km/h) in a 50 mph (80 km/h) zone of curved tracks when it derailed.[3]

Some of the passengers had to be extricated from the wrecked cars. Many of the passengers and local residents helped first responders during the rescue operation. Five local hospitals treated the injured. The derailment disrupted train service for several days. 

(Source Wikipedia https://en.wikipedia.org/wiki/2015_Philadelphia_train_derailment)

What was not reported was the difficulties that first responders, namely paramedics had in finding an emergency room capable of taking on the massive load of patients.  In the years prior to this accident, several hospitals, due to monetary reasons, had to close their emergency rooms or reduce them in size. In addition only two in Philadelphia were capable of accepting gun shot victims (Temple University Hospital was the closest to the derailment but one of the emergency rooms which would accept gun shot victims. This was important as Temple University ER, being in North Philadelphia, is usually very busy on any given night.  The stress to the local health system revealed how one disaster could easily overburden many hospitals.

 

Over the past decade many hospitals, especially rural hospitals, have been shuttered or consolidated into bigger health systems.  The graphic below shows this

From Bloomberg: US Hospital Closings Leave Patients with Nowhere to go

 

 

https://images.app.goo.gl/JdZ6UtaG3Ra3EA3J8

 

Note the huge swath of hospital closures in the midwest, especially in rural areas.  This has become an ongoing problem as the health care system deals with rising costs.

 

Lesson:  Epidemic Stresses an already stressed out US healthcare system

 

Please see our Coronavirus Portal at

https://pharmaceuticalintelligence.com/coronavirus-portal/

 

for more up-to-date scientific, clinical information as well as persona stories, videos, interviews and economic impact analyses

and @pharma_BI

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Reporter: Gail S. Thornton, M.A.

The following article is reprinted from the Anchorage Daily News.

https://www.adn.com/alaska-news/2020/03/18/one-of-alaskas-first-confirmed-coronavirus-patients-tells-his-story/

One of Alaska’s first confirmed coronavirus patients tells his story

March 19, 2020

A Ketchikan man who contracted the illness caused by the new coronavirus is speaking out about his experience.

In a social media post and an interview with the Ketchikan Daily News, he described his symptoms, how he was tested and his experience communicating with Alaska public health officials.

As of Wednesday morning, Glenn Brown, the attorney for the Ketchikan Gateway Borough, is one of nine people statewide who have confirmed cases of the virus. Officials have not said any of the people with confirmed cases have been hospitalized.

Brown said in a Facebook post that he was feeling better and was notified by public health officials that he’d tested positive for COVID-19 on Tuesday afternoon.

“I became sick Saturday morning with fever, headache, general achiness and chills,” Brown wrote.

Brown said he has “no idea” how he contracted the illness.

“I interacted with no one in recent weeks who was exhibiting obvious symptoms,” he wrote.

According to a statement Tuesday from the Ketchikan Emergency Operations Center saying one of its employees tested positive for the virus, the employee had a history of travel to the Lower 48. The Ketchikan Emergency Operations Center on Wednesday confirmed Brown is the employee.

The Ketchikan Daily News reported that Brown had recently traveled to Oregon and Juneau before returning to Ketchikan on March 9.

After public health officials told Brown his diagnosis, he said that he went through more than an hour of questions with them, he told the Ketchikan Daily News.

“I used everything from cellphone records to work calendars to debit card bills, to recall everybody that I may have had contact with,” Brown told the Ketchikan Daily News. “I wanted to provide that information to public health, (so) that they could alert those people and really hope to kind of arrest this thing.”

Brown told the paper that public health officials focused on two days before he developed symptoms of the illness. Brown had been “working closely with borough staff and upper management” in those days as part of his job, the paper reported.

“I apologize for causing undue concern for anyone, especially my co-workers at the Borough,” Brown said in the Facebook post.

Ketchikan Gateway Borough employees in direct contact with Brown were instructed to self-quarantine for two weeks, according to the Ketchikan Emergency Operations Center statement.

The statement also said that the borough had hired a service to disinfect the now-closed White Cliff Building, which houses the Ketchikan Borough offices.

According to the Ketchikan Daily News, the last time Brown was at the borough’s White Cliff Building was Friday.

The paper reported that as of Tuesday night, there were no plans to test people who had been in direct contact with Brown.

A public information officer for Ketchikan’s Emergency Operations Center told the Ketchikan Daily News that she understood that to be tested, people would need to have “several” symptoms of the virus.

“I would also ask that you join me and all of Ketchikan to actively minimize community transmission so that we can protect our seniors or other medically vulnerable folks in Ketchikan,” Brown wrote. “I pray that we all make it through this largely unharmed, and together.”

The first person in Alaska to test positive for COVID-19 was an air cargo pilot who arrived at Ted Stevens Anchorage International Airport on March 11, officials announced last week. He went through the airport’s North Terminal, which is separate from the domestic terminal.

Alaska’s chief medical officer, Dr. Anne Zink, said last week the man had self-isolated and was “stable.”

On Monday, officials said two older men in Fairbanks were diagnosed with the illness. Both had recently traveled to the Lower 48, Zink said, but were not traveling together.

In addition to the Anchorage case, the case in Ketchikan and the two in Fairbanks, officials on Tuesday announced that two more people had become sick with the virus — one in Fairbanks and one in Anchorage — bringing the total number of confirmed cases as of Wednesday morning to six.

Zink said that both of those cases were also travel-related. None of the three people who tested positive for COVID-19 on Tuesday were hospitalized, Zink said.

Fairbanks Memorial Hospital released a statement Tuesday saying a woman with a history of recent travel had tested positive for COVID-19.

“She self-isolated prior to testing,” the statement said. “This patient has been notified and is in stable condition and does not require hospitalization.”

A University of Alaska Fairbanks employee was one of the people who had recently tested positive for the virus in Alaska, university officials said Tuesday.

An internal email advised anyone who had used the O’Neill Building, which houses the College of Fisheries and Ocean Sciences, to stay home and monitor themselves for two weeks.

State and local officials have taken a series of steps to stem the spread of COVID-19 in Alaska, including closing schools, calling on hospitals to halt elective surgeries and shutting down dine-in service at all restaurants, bars, breweries, cafes and similar businesses.

About this Author

Morgan Krakow

Morgan Krakow is a general assignment reporter for the Anchorage Daily News. She is a 2019 graduate of the University of Oregon and spent the past summer as a reporting intern on the general assignment desk of The Washington Post. Contact her at mkrakow@adn.com.

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Responses to the #COVID-19 outbreak from Oncologists, Cancer Societies and the NCI: Important information for cancer patients

Curator: Stephen J. Williams, Ph.D.

UPDATED 3/20/2020

Among the people who are identified at risk of coronovirus 2019 infection and complications of the virus include cancer patients undergoing chemotherapy, who in general, can be immunosuppressed, especially while patients are undergoing their treatment.  This has created anxiety among many cancer patients as well as their care givers and prompted many oncologist professional groups, cancer societies, and cancer centers to formulate some sort of guidelines for both the cancer patients and the oncology professional with respect to limiting the risk of infection to coronavirus (COVID19). 

 

This information will be periodically updated and we are working to get a Live Twitter Feed to bring oncologist and cancer patient advocacy groups together so up to date information can be communicated rapidly.  Please see this page regularly for updates as new information is curated.

IN ADDITION, I will curate a listing of drugs with adverse events of immunosuppression for people who might wonder if the medications they are taking are raising their risk of infections.

Please also see @pharma_BI for updates as well.

Please also see our Coronavirus Portal at https://pharmaceuticalintelligence.com/coronavirus-portal/

For ease of reading information for patients are BOLDED and in RED

ASCO’s Response to COVID-19

From the Cancer Letter: The following is a guest editorial by American Society of Clinical Oncology (ASCO) Executive Vice President and Chief Medical Officer Richard L. Schilsky MD, FACP, FSCT, FASCO. This story is part of The Cancer Letter’s ongoing coverage of COVID-19’s impact on oncology. A full list of our coverage, as well as the latest meeting cancellations, is available here.

 

The worldwide spread of the coronavirus (COVID-19) presents unprecedented challenges to the cancer care delivery system.

Our patients are already dealing with a life-threatening illness and are particularly vulnerable to this viral infection, which can be even more deadly for them. Further, as restrictions in daily movement and social distancing take hold, vulnerable patients may be disconnected from friends, family or other support they need as they manage their cancer.

As providers, we rely on evidence and experience when treating patients but now we face uncertainty. There are limited data to guide us in the specific management of cancer patients confronting COVID-19 and, at present, we have no population-level guidance regarding acceptable or appropriate adjustments of treatment and practice operations that both ensure the best outcome for our patients and protect the safety of our colleagues and staff.

As normal life is dramatically changed, we are all feeling anxious about the extreme economic challenges we face, but these issues are perhaps even more difficult for our patients, many of whom are now facing interruption

As we confront this extraordinary situation, the health and safety of members, staff, and individuals with cancer—in fact, the entire cancer community—is ASCO’s highest priority.

ASCO has been actively monitoring and responding to the pandemic to ensure that accurate information is readily available to clinicians and their patients. Recognizing that this is a rapidly evolving situation and that limited oncology-specific, evidence-based information is available, we are committed to sharing what is known and acknowledging what is unknown so that the most informed decisions can be made.

To help guide oncology professionals as they deal with the impact of coronavirus on both their patients and staff, ASCO has collated questions from its members, posted responses at asco.org and assembled a compendium of additional resources we hope will be helpful as the virus spreads and the disease unfolds. We continue to receive additional questions regarding clinical care and we are updating our FAQs on a regular basis.

We hope this information is helpful even when it merely confirms that there are no certain answers to many questions. Our answers are based on the best available information we identify in the literature, guidance from public health authorities, and input received from oncology and infectious disease experts.

For patients, we have posted a blog by Dr. Merry Jennifer Markham, chair of ASCO’s Cancer Communications Committee. This can be found on Cancer.Net, ASCO’s patient information website, and it provides practical guidance to help patients reduce their risk of exposure, better understand COVID-19 symptoms, and locate additional information.

This blog is available both in English and Spanish. Additional blog posts addressing patient questions will be posted as new questions are received and new information becomes available.

Find below a Tweet from Dr.Markham which includes links to her article on COVID-19 for cancer patients

https://twitter.com/DrMarkham/status/1237797251038220289?s=20

NCCN’s Response to COVID-19 and COVID-19 Resources

JNCCN: How to Manage Cancer Care during COVID-19 Pandemic

Experts from the Seattle Cancer Care Alliance (SCCA)—a Member Institution of the National Comprehensive Cancer Network® (NCCN®)—are sharing insights and advice on how to continue providing optimal cancer care during the novel coronavirus (COVID-19) pandemic. SCCA includes the Fred Hutchinson Cancer Research Center and the University of Washington, which are located in the epicenter of the COVID-19 outbreak in the United States. The peer-reviewed article sharing best practices is available for free online-ahead-of-print via open access at JNCCN.org.

Coronavirus disease 2019 (COVID-19) Resources for the Cancer Care Community

NCCN recognizes the rapidly changing medical information relating to COVID-19 in the oncology ecosystem, but understands that a forum for sharing best practices and specific institutional responses may be helpful to others.  Therefore, we are expeditiously providing documents and recommendations developed by NCCN Member Institutions or Guideline Panels as resources for oncology care providers. These resources have not been developed or reviewed by the standard NCCN processes, and are provided for information purposes only. We will post more resources as they become available so check back for additional updates.

Documents

Links

National Cancer Institute Response to COVID-19

More information at https://www.cancer.gov/contact/emergency-preparedness/coronavirus

What people with cancer should know: https://www.cancer.gov/coronavirus

Get the latest public health information from CDC: https://www.coronavirus.gov

Get the latest research information from NIH: https://www.nih.gov/coronavirus

 

Coronavirus: What People with Cancer Should Know

ON THIS PAGE

Both the resources at cancer.gov (NCI) as well as the resources from ASCO are updated as new information is evaluated and more guidelines are formulated by members of the oncologist and cancer care community and are excellent resources for those living with cancer, and also those who either care for cancer patients or their family and relatives.

Related Resources for Patients (please click on links)

 

 

 

Some resources and information for cancer patients from Twitter

Twitter feeds which may be useful sources of discussion and for cancer patients include:

 

@OncLive OncLive.com includes healthcare information for patients and includes videos and newsletters

 

 

@DrMarkham Dr. Markham is Chief of Heme-Onc & gyn med onc @UF | AD Med Affairs @UFHealthCancer and has collected very good information for patients concerning #Covid19 

 

 

@DrMaurieMarkman Dr. Maurie Markman is President of Medicine and Science (Cancer Centers of America, Philadelphia) @CancerCenter #TreatThePerson #Oncology #Genomics #PrecisionMedicine and hosts a great online live Tweet feed discussing current topics in cancer treatment and care for patients called #TreatThePerson Chat

UPDATED 3/20/2020 INFORMATION FROM NCI DESIGNATED CANCER CENTERS FOR PATIENTS/PROVIDERS

The following is a listing with links of NCI Designated Comprehensive Cancer Centers and some select designated Cancer Centers* which have information on infectious risk guidance for cancer patients as well as their physicians and caregivers.   There are 51 NCI Comprehensive Cancer Centers and as more cancer centers formulate guidance this list will be updated. 

 

Cancer Center State Link to COVID19 guidance
City of Hope CA Advice for cancer patients, survivors and caregivers
Jonsson Cancer Center at UCLA CA Cancer and COVID19
UCSF Hellen Diller Family Comprehensive Cancer CA COVID-19 Links for Patients and Providers
Lee Moffit FL Protecting against Coronavirus 19
University of Kansas Cancer Center* KS COVID19 Info for patients
Barbara & Karmanos Cancer Institute (Wayne State) MI COVID19 Resources
Rogel Cancer Center (Univ of Michigan) MI COVID19 Patient Specific Guidelines
Alvin J. Siteman Cancer Center (MO) Coronavirus
Fred & Pamela Buffet CC* NE Resources for Patients and Providers
Rutgers Cancer Institute of NJ NJ What patients should know about COVID19
Memorial Sloan Kettering NY What COVID19 means for cancer patients
Herbert Irving CC (Columbia University) NY Coronavirus Resource Center
MD Anderson Cancer  TX Planning for Patients, Providers
Hunstman Cancer Center UT COVID19 What you need to know
Fred Hutchinson WA COVID19 What patients need to know

 

 

Please also see related information on Coronavirus 2019 and Cancer and Immunotherapy at the following links on the Open Access Online Journal:

Volume Two: Cancer Therapies: Metabolic, Genomics, Interventional, Immunotherapy and Nanotechnology in Therapy Delivery 

at

https://pharmaceuticalintelligence.com/biomed-e-books/series-c-e-books-on-cancer-oncology/volume-two-immunotherapy-in-cancer-radiation-oncology/

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Coronavirus Portal

 

 

 

 

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Ethics Behind Genetic Testing in Breast Cancer: A Webinar by Laura Carfang of survivingbreastcancer.org

Reporter: Stephen J. Williams, PhD

The following are Notes from a Webinar sponsored by survivingbreastcancer.org  on March 12,2020.

The webinar started with a brief introduction of attendees , most who are breast cancer survivors.  Survivingbreastcancer.org is an organization committed to supplying women affected with breast cancer up to date information, including podcasts, webinars, and information for treatment, care, and finding support and support groups.

Some of the comments of survivors:

  • being strong
  • making sure to not feel overwhelmed on initial diagnosis
  • get good information
  • sometimes patients have to know to ask for genetic testing as physicians may not offer it

Laura Carfang discussed her study results presented at  a bioethics conference in Clearwater, FL   on issues driving breast cancer patient’s  as well as at-risk women’s decision making process for genetic testing.  The study was a phenomenological study in order to determine, through personal lived experiences, what are pivotal choices to make genetic testing decisions in order to improve clinical practice.

The research involved in depth interviews with 6 breast cancer patients (all women) who had undergone breast cancer genetic testing.

Main themes coming from the interviews

  • information informing decisions before diagnosis:  they did not have an in depth knowledge of cancer or genetics or their inherent risk before the diagnosis.
  • these are my genes and I should own it: another common theme among women who were just diagnosed and contemplating whether or not to have genetic testing
  • information contributing to decision making after diagnosis: women wanted the option, and they wanted to know if they carry certain genetic mutations and how it would guide their own personal decision to choose the therapy they are most comfortable with and gives them the best chance to treat their cancer (the decision and choice is very personal)
  • communicating to family members and children was difficult for the individual affected;  women found that there were so many ramifications about talking with family members (how do I tell children, do family members really empathize with what I am going through).  Once women were tested they felt a great strain because they now were more concerned with who in their family (daughters) were at risk versus when they first get the diagnosis the bigger concern was obtaining information.
  • Decision making to undergo genetic testing not always linear but a nonlinear process where women went from wanting to get tested for the information to not wanting to get tested for reasons surrounding negative concerns surrounding knowing results (discrimination based on results, fear of telling family members)
  • Complex decision making involves a shift or alteration in emotion
  • The Mayo Clinic has come out with full support of genetic testing and offer to any patient.

Additional resources discussed was a book by Leslie Ferris Yerger “Probably Benign” which discusses misdiagnoses especially when a test comes back as “probably benign” and how she found it was not.

 

for more information on further Podcasts and to sign up for newsletters please go to https://www.survivingbreastcancer.org/

and @SBC_org

More articles on this Online Open Access Journal on Cancer and Bioethics Include:

Ethical Concerns in Personalized Medicine: BRCA1/2 Testing in Minors and Communication of Breast Cancer Risk

Tweets and Re-Tweets by @Pharma_BI ‏and @AVIVA1950 at 2019 Petrie-Flom Center Annual Conference: Consuming Genetics: Ethical and Legal Considerations of New Technologies, Friday, May 17, 2019 from 8:00 AM to 5:00 PM EDT @Harvard_Law

Genomics & Ethics: DNA Fragments are Products of Nature or Patentable Genes?

Study Finds that Both Women and their Primary Care Physicians Confusion over Ovarian Cancer Symptoms May Lead to Misdiagnosis

 

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PEER-REVIEWED MEDICAL JOURNAL PUBLISHES LANDMARK STUDY ON EFFICACY AND SAFETY OF FDgard® (COLM-SST), DEMONSTRATING RAPID REDUCTION OF FUNCTIONAL DYSPEPSIA (FD OR RECURRING, MEAL-TRIGGERED INDIGESTION) SYMPTOMS WITHIN 24 HOURS

  • FDgard® (COLM-SST), a solid-state microsphere formulation of caraway oil and l-Menthol, taken daily and proactively 30-60 minutes before meals, showed statistically significant, rapid reduction of Functional Dyspepsia (FD) symptoms within 24 hours and, additionally, relief of severe FD symptoms.
  • FDREST clinical trial with FDgard represents an important medical advance, as no previous trials have shown rapid relief of FD symptoms. There are no approved products for this highly prevalent condition.
  • In FDREST, patients received greater and more durable benefits with the addition of FDgard taken daily and proactively to their typical medical regimen.
  • FDREST is the first clinical trial in FD to use patented, Site Specific Targeting (SST®) technology to deliver the FDgard formulation to the upper belly (duodenum), the primary site of disturbance in FD.
  • FDgard represents an effective, safe and well-tolerated option to address the unmet medical needs of millions of adults with FD.

Reporter: Gail S. Thornton

Boca Raton Fl., – (April 30, 2019) – IM HealthScience today announced that Clinical and Translational Gastroenterology (CTG), a peer-reviewed medical journal, has published the U.S. results of a landmark, double-blind, placebo-controlled study, FDREST™ (Functional Dyspepsia Reduction Evaluation and Safety Trial), which showed statistically significant, rapid reduction of Functional Dyspepsia (FD or recurring, meal-triggered indigestion) symptoms within 24 hours and, additionally, relief of severe FD symptoms.

The study, entitled “A Novel, Duodenal-Release Formulation of a Combination of Caraway Oil and L-Menthol for the Treatment of Functional Dyspepsia: A Randomized Controlled Trial,” is now available to the public via open access on the Clinical and Translational Gastroenterology website. Clinical and Translational Gastroenterology, published on behalf of the American College of Gastroenterology (ACG), is dedicated to innovative clinical work in the field of gastroenterology and hepatology.

The FDREST study demonstrated that patients who took COLM-SST (FDgard®) on a daily and proactive basis, 30 to 60 minutes before meals, along with commonly used off-label FD medications versus patients who took placebo along with commonly used off-label FD medications, experienced a statistically significant, rapid reduction of FD symptoms within 24 hours across the FD study population.

This study had a higher hurdle than previous studies on a similar combination of ingredients. Firstly, concomitant medications for FD symptoms were allowed in order to assess FDgard in a real-world setting. Second, only a subgroup of patients in FDREST was categorized into the high-symptom burden, while they constituted the entire groups in previous studies. Among this subgroup of patients with the high-symptom burden, FDgard showed efficacy at 24 hours. In spite of the polypharmacy and use of rescue medications for FD, after 48 hours of first dose, FDgard helped further improve symptoms at 4 weeks, especially in those high-symptom burden patients. In all cases, FDgard was safe and well-tolerated.  

The study results of FDREST were first presented at Digestive Disease Week (DDW), the largest gathering of gastroenterologists, in May 2017.

Study Commentary

Commenting on the study, lead author William Chey, M.D., FACG, Director in the Division of Gastroenterology, Michigan Medicine Gastroenterology Clinic, Ann Arbor, said, “This landmark study was designed to answer a very important scientific question about the effectiveness, safety, and tolerability of a novel and innovative formulation of caraway oil and l-Menthol designed as solid state, enteric coated microspheres for targeted duodenal release for FD. In patients taking their usual medications for FD, FDgard was found to be effective, safe and well tolerated in rapidly reducing symptoms and in relieving severe symptoms.” Chey continued, “The positive finding at 24 hours is clinically important as symptoms are often triggered by a meal and patients are looking for rapid relief of those symptoms.”

The study authors also cited the importance of utilizing the microsphere-based site-specific targeting of FDgard (caraway oil and l-Menthol, the active ingredient in peppermint oil) to the duodenum. They wrote, “This site (duodenum) was targeted primarily due to mounting evidence that gastroduodenal mucosal integrity and low-grade inflammation play a role in FD. Furthermore, studies have shown that caraway oil and peppermint oil act on the duodenum to induce smooth muscle relaxation, and that l-Menthol has anti-inflammatory effects.” This may help normalize motility effects.

About FDREST™

FDREST™ (Functional Dyspepsia Reduction and Evaluation Safety Trial) was a multi-centered, post-marketing, parallel group, U.S-based study conducted at seven university-based or gastroenterology research-based centers (study period July 1, 2015, to September 14, 2016). The study was designed to compare the efficacy, safety and tolerability of FDgard plus commonly used, off-label medications for FD vs. a control group of placebo plus commonly used, off-label medications prescribed for FD.

Ninety-five patients were enrolled (mean age = 43.4 years; 75.8 percent women). At 24 hours, the active arm reported a statistically significant reduction in Postprandial Distress Syndrome (PDS) symptoms (P = 0.039), and a nonsignificant trend toward benefit of Epigastric Pain Syndrome (EPS) symptoms (P = 0.074). In patients with more severe symptoms, approximately three-quarters showed substantial global improvement (i.e., clinical global impressions) after 4 weeks of treatment vs. half in the control arm. These differences were statistically significant for patients with EPS symptoms (epigastric pain or discomfort and burning) (P = 0.046), and trending toward significance for patients with PDS symptoms (early satiety, abdominal heaviness, pressure and fullness) (P = 0.091). There were no statistically significant differences between groups for Global Overall Symptom scores for the overall population at 2 and 4 weeks.

Dr. Chey said, “The results of this high-quality study highlight an advance in the management of FD, as current off-label medications such as PPIs, H2RAs and antidepressants offer only a modest level of therapeutic gain over placebo and may be associated with adverse events, especially with continued use. FDgard addresses a significant unmet medical need for a product to help manage symptoms in the 1 in 6 adults suffering from this common disorder.”

About Functional Dyspepsia (FD)

Functional dyspepsia is a very common disorder affecting 11 percent – 29.2 percent of the world’s population1, making it comparable in prevalence to IBS. However, unlike IBS, there is no FDA approved product to treat FD. Sufferers are often treated off-label with prescribed proton pump inhibitors (PPIs), histamine type-2 receptor antagonists (H2RAs), antidepressants, and prokinetics. While offering relief to a portion of FD patients, some of these have been associated with adverse events. Functional dyspepsia can have a negative effect on workplace attendance and productivity, with associated costs estimated in excess of $18 billion annually.2

In FD, which is typically recurring, meal-triggered indigestion with no known organic cause, the normal digestive processes are disrupted along with digestion and absorption of food nutrients. FD is accompanied by symptoms such as epigastric pain or discomfort, epigastric burning, postprandial fullness, inability to finish a normal sized meal, heaviness, pressure, bloating in the upper abdomen, nausea, and belching. When doctors diagnose FD, they often identify patients as those who have these symptoms for at least three months, with symptom onset six months previously.

About FDgard®

FDgard® is a nonprescription medical food designed to address the unmet medical need for products to help manage Functional Dyspepsia (FD or recurring, meal-triggered indigestion) and its accompanying symptoms.  FDgard capsules contain caraway oil and l-Menthol, the primary component in peppermint oil, for the dietary management of FD. These two main ingredients are specially formulated to be available in a solid state.  With patented Site Specific Targeting (SST®) technology pioneered by IM HealthScience, FDgard capsules release individually triple-coated, solid-state microspheres of caraway oil and l-Menthol quickly and reliably where they are needed most in FD — the duodenum or upper belly. The l-Menthol helps with smooth muscle relaxation and provides analgesic and anti-inflammatory activities.3–5 Caraway oil helps mitigate the effect of gastric acid on the stomach wall and also helps to normalize gallbladder function and may help to normalize motility in the small intestine (primarily the duodenum) and in the stomach.6,7 In addition to caraway oil and l-Menthol, FDgard also provides fiber and amino acids (from gelatin protein). These ingredients have additional positive effects on the gut wall and thus help toward normalizing digestion and absorption.            

Caraway oil and peppermint oil have a history of working in FD. In multiple clinical studies, the combination of caraway oil and peppermint oil has been shown to manage FD and its accompanying symptoms, such as reducing the intensity of epigastric pain, pain frequency, dyspeptic discomfort, and the intensity of sensations of pressure, abdominal heaviness and fullness significantly better than control.8,9 Cisapride, no longer an FDA-approved pro-motility drug after its removal from the market in 2000 due to cardiovascular side effects, was shown to have efficacy similar to a caraway oil/peppermint oil formulation10.

Complete and final results from a real-world, observational study of 600 patients who took FDgard, called FDACT™ (Functional Dyspepsia Adherence and Compliance Trial), were selected after peer review and presented by William D. Chey, M.D., FACG, at the World Congress of Gastroenterology at ACG 2017 in Orlando, Florida. The data showed there was a consistently high level of patient satisfaction and rapid improvement of FD symptoms with the product. A majority of patients (95 percent) reported major or moderate improvement in their overall FD symptoms, while many patients (86.4 percent) indicated experiencing relief from symptoms within 2 hours after taking FDgard. The findings from FDACT substantiate the data reported in FDREST.

The usual adult dose of FDgard is 2 capsules, as needed, up to two times a day, not to exceed six capsules per day. Many physicians are now recommending taking FDgard daily and proactively 30-60 minutes before a meal, as this enables the supportive effect of FDgard to start as early as possible. While FDgard does not require a prescription and is available in retail outlets and online, it is a medical food that should be used under medical supervision.

About IM HealthScience®

IM HealthScience® (IMH) is the innovator of IBgard®and FDgard®for the dietary management of Irritable Bowel Syndrome (IBS) and Functional Dyspepsia (FD or recurring, meal-triggered indigestion), respectively. In 2017, IMH added Fiber Choice®, a line of prebiotic fibers, to its product line via an acquisition. The sister subsidiary of IMH, Physician’s Seal®, also provides REMfresh®,

a well-known continuous release and absorption melatonin (CRA-melatonin™) supplement for sleep.

IMH is a privately held company based in Boca Raton, Florida. It was founded in 2010 by a team of highly experienced pharmaceutical research and development and management executives. The company is dedicated to developing products to address overall health and wellness, especially in digestive health conditions with a high unmet medical need. The IM HealthScience advantage comes from developing products based on its patented, targeted-delivery technologies called Site Specific Targeting (SST). For more information, visit www.imhealthscience.com to learn about the company, or www.IBgard.com,

 www.FDgard.com, www.FiberChoice.com, and www.Remfresh.com.

References

1.        Mahadeva S, Goh KL. Epidemiology of functional dyspepsia. A global perspective. World J Gastroenterol. 2006. doi:10.3748/wjg.v12.i17.2661.

2.        Lacy BE, Weiser KT, Kennedy AT, Crowell MD, Talley NJ. Functional dyspepsia: the economic impact to patients. Aliment Pharmacol Ther. 2013;38(May):170-177. doi:10.1111/apt.12355.

3.        Amato A, Liotta R, Mulè F. Effects of menthol on circular smooth muscle of human colon: Analysis of the mechanism of action. Eur J Pharmacol. 2014. doi:10.1016/j.ejphar.2014.07.018.

4.        Liu B, Fan L, Balakrishna S, Sui A, Moris JB, Jordt S-E. TRPM8 is the Principal Mediator of Menthol-induced Analgesia of Acute and Inflammatory Pain. Pain. 2013;154(10):2169-2177. doi:10.1016/j.pain.2013.06.043.TRPM8.

5.        Juergens U, Stober M, Vetter H. The anti-inflammatory activity of L-menthol compared to mint oil in human monocytes in vitro: a novel perspective for its therapeutic use in inflammatory diseases. Eur J Med Res. 1998;3(12):539-545.

6.        Alhaider A, Al-Mofleh I, Mossa J, Al-Sohaibani M, Rafatullah S, Qureshi S. Effect of Carum carvi on experimentally induced gastric mucosal damage in Wistar albino rats. Int J Pharmacol. 2006;2(3):309-315.

7.        Micklefield G, Jung O, Greving I, May B. Effects of intraduodenal application of peppermint oil (WS 1340) and caraway oil (WS 1520) on gastroduodenal motility in healthy volunteers. Phyther Res. 2003;17:135-140. doi:10.1002/ptr.1089.

8.        May B, Köhler S, Schneider B. Efficacy and tolerability of a fixed combination of peppermint oil and caraway oil in patients suffering from functional dyspepsia. Aliment Pharmacol Ther. 2000;14:1671-1677. doi:10.1046/j.1365-2036.2000.00873.x.

9.        Rich G, Shah A, Koloski N, et al. A randomized placebo-controlled trial on the effects of Menthacarin, a proprietary peppermint- and caraway-oil-preparation, on symptoms and quality of life in patients with functional dyspepsia. Neurogastroenterol Motil. 2017;29(May):e13132. doi:10.1111/nmo.13132.

10.      Madisch A, Heydenreich C, Wieland V, Hufnagel R, Hotz J. Treatment of Functional Dyspepsia with a Fixed Peppermint Oil and Caraway Oil Combination Preparation as Compared to Cisapride – A multicenter, reference-controlled double-blind equivalence study. Arzneimittelforsch Drug Res. 1999;49(II):925-932.

This information is for educational purposes only and is not meant to be a substitute for the advice of a physician or other health care professional. This information should not be used for diagnosing a health problem or disease. While medical foods do not require prior approval by the FDA for marketing, they must comply with regulations. It should not be assumed that medical foods are alternatives for FDA-approved drugs. Only doctors can definitively diagnose functional dyspepsia. Use under medical supervision. The company will strive to keep information current and consistent but may not be able to do so at any specific time. Generally, the most current information can be found on www.fdgard.com. Individual results may vary.

Other related articles were published in this Open Access Online Scientific Journal include the following:

2017

Series D: BioMedicine & Immunology https://pharmaceuticalintelligence.com/biomed-e-books/series-d-e-books-on-biomedicine/

2015

The relationship of stress hypermetabolism to essential protein need

https://pharmaceuticalintelligence.com/2015/10/25/the-relationship-of-stress-hypermetabolism-to-essential-protein-needs/

Liposomes, Lipidomics and Metabolism

https://pharmaceuticalintelligence.com/2015/11/02/liposomes-lipidomics-and-metabolism/

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Innovation + Technology = Good Patient Experience

Reporter: Gail S. Thornton

 

Following are a sampling of several relevant articles comprising health innovation and technology, which may ultimately lead to a good patient experience. 

When a health journalist found out her 4-year-old son had a brain tumor, her family faced an urgent choice: proven but punishing rounds of chemotherapy, or a twice-a-day pill of a new “targeted” therapy with a scant track record.

SOURCE

https://www.reuters.com/investigates/special-report/genomics-tumor/

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Paying for Tumor Testing

A recent U.S. government decision about coverage of tumor sequencing could affect cancer patients.

SOURCE

https://www.cancertodaymag.org/Pages/cancer-talk/Paying-for-Tumor-Testing.aspx

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Dr. Elaine Schattner has authored numerous articles on cancer — as a doctor and patient. She is a freelance journalist and former oncologist who lives in New York City. She is writing a book about public attitudes toward cancer.

A life-long patient with scoliosis and other chronic medical conditions, and a history of breast cancer, Elaine’s current interests include physicians’ health, cancer, and medical journalism.

SOURCE

https://www.elaineschattner.com/

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Speaking Up for Patient Preferences in Cancer Treatment Decisions.

Informed consent should include your input.

SOURCE

https://health.usnews.com/health-news/patient-advice/articles/2016-04-15/speaking-up-for-patient-preferences-in-cancer-treatment-decisions

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Breast Cancer, Risk And Women’s Imperfect Choices

SOURCE

https://www.npr.org/sections/health-shots/2013/05/15/184188710/breast-cancer-risk-and-womens-imperfect-choices

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A cancer researchers takes cancer personally: Dr. Tony Blau, who started All4Cure, an online platform for myeloma clinicians and researchers to interact directly with patients to come up with a customer treatment plan.

SOURCE

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Julia Louis-Dreyfus Acts Out: The actress on challenging comedy’s sexism, fighting cancer, and becoming the star of her own show.

SOURCE

https://www.newyorker.com/magazine/2018/12/17/julia-louis-dreyfus-acts-out

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Thanks to Wendy Lund, CEO of GCI Health (gcihealth.com)  and her team for compiling part of this list. 

Interoperability, patient matching could be fixed by smartphone apps, RAND says: Patients need quality information. A physician at George Washington University School of Medicine and Health Sciences believes that the healthcare community must improve reports by making them more accessible to patients.

SOURCE

https://www.healthcareitnews.com/news/interoperability-patient-matching-could-be-fixed-smartphone-apps-rand-says

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Sometimes Patients Simply Need Other Patients: Finding a support community is also getting easier, through resources like the Database of Patients’ Experiences, which houses videos of patients speaking about their experiences

 

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At These Hotels and Spas, Cancer is No Obstacle to Quality Care: A trend among spas and wellness resorts shows the increasing integration of safe wellness treatment options for cancer patients.

SOURCE

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