Advocacy smorgasbord-Advocate 4 breast cancer, healthcare causes
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Update: The Henrietta Lacks Enhancing Cancer Research Act Signed Into Law
Dear Advocate,
We are excited to share that the Henrietta Lacks Enhancing Cancer Research Act was signed into law yesterday, January 5, 2021! This vital bill will increase access to cancer clinical trial participation among communities that are traditionally underrepresented in trials in order to decrease health disparities.
The bill is named after Henrietta Lacks, who died of cervical cancer in 1951. During her cancer treatment, doctors took samples of her tumor, and from this the HeLa cell line was created. Without her or her family's knowledge, these HeLa cells were used in modern medical research to develop treatments for a variety of diseases, including cancer.
Clinical trials provide individuals with cancer the opportunity to participate in ground-breaking research that may bring about treatments that improve quality of life, extend survival, and even prove life-saving. However, only a small fraction ultimately end up enrolling in a cancer clinical trial due to barriers that make participating difficult or even impossible, including:
- Lack of available trials at local sites
- Restrictive eligibility criteria
- Transportation to trial sites
- Taking time off from work
- Potentially increased medical and non-medical costs
The Henrietta Lacks Enhancing Cancer Research Act aims to reduce these barriers and make it easier for patients from diverse backgrounds to enroll in clinical trials by directing the federal government to study and publish a report regarding barriers to participation in federally funded cancer clinical trials by populations that have been traditionally underrepresented in such trials.
This update courtesy of Cancer Policy Institute at the Cancer Support Community
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Sharing this report by CBS news.
Medical Boards Often Protect Doctors Over Patients
The reporters advocate opening the National Practitioner Database to the public - and I concur. Contact your legislators.
https://www.cbsnews.com/video/medical-boards-often...
{Relates to practice in the U.S.}
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Sharing... FYI....
End of Year Package Includes Provisions to Make Cancer Care More Accessible and Affordable
Late last month Congress approved an end-of-year funding package. We were thrilled to see that Congress prioritized cancer patients by including the following pieces of legislation which are now enacted into law :
- CLINICAL TREATMENT Act: Guarantees coverage of the routine care costs (e.g. physician visits or laboratory tests) of clinical trial participation for Medicaid enrollees with life-threatening conditions, like cancer.
- No Surprises Act: Protects patients from surprise medical bills from emergency and non-emergency services, including cancer care.
- Removing Barriers to Colorectal Cancer Screening Act: Waives cost-sharing requirements under Medicare for colorectal cancer screenings, making these critical screenings more affordable.
The bill also had emergency coronavirus relief provisions, including direct payments (economic impact payments), expanded unemployment insurance, and food and rental assistance, among other relief provisions. Click on the button below to learn more.
{These updates courtesy of Cancer Support Community.}
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EEOC Sues Employer, Claiming Failure to Accommodate Worker at Risk for COVID-19(link is external)
Georgia: The U.S. Equal Employment Opportunity Commission (EEOC) filed a lawsuit against ISS Facility Services Inc., claiming the employer unlawfully denied a request for a reasonable accommodation, and then fired the worker for making the request. The worker, whose heart condition placed her at heightened risk for contracting COVID-19, had asked to work from home.
https://www.eeoc.gov/newsroom/eeoc-sues-iss-facili...
{From Mid-Atlantic ADA Center and eeoc.gov; Free access}
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Public Comment Period for the Lymphedema Treatment Act this summer
Later this year there will be a Public Comment Period for the Lymphedema Treatment Act. You are probably wondering, what is a Public Comment Period, why is it important, and can I participate?
Whenever there is new coverage or significant changes to existing coverage, the Centers for Medicare and Medicaid Services (CMS) is required to offer a Public Comment Period. A Public Comment Period for the Lymphedema Treatment Act will occur, likely mid-year during the summer months, and this will be an important opportunity for all stakeholders and advocates to take action!
Just prior to the comment period, CMS will release preliminary rules related to the coverage (like how many garments each patient can get at one time, how often they can be replaced, etc.). The public will then have 60 days to comment on those proposed rules, after which CMS may decide to make changes.
Everyone will be encouraged to participate when this opportunity becomes available! If there is anything we don't like about the initial proposals, or wish were better, the public comment period is our opportunity to try and convince them to modify those things before the rules are finalized.
You can learn more about the Rulemaking Process and the Public Comment Period here. In the meantime, if you have other questions, please review our Frequently Asked Questions document, which we are continually updating as new information becomes available. Thank you!
This information courtesy of:
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org0
