Happy Fall Y’all,
Terry’s Hot Take is a monthly resource for lawmakers by the Executive Director of Patients Rising, on behalf of the 133 million Americans living with chronic disease.
- It’s Ovarian Cancer: What Women Need Congress To Do: In 2021, an estimated 21,410 new cases of ovarian cancer will be diagnosed in the U.S. and 13,770 women will die from the disease. When diagnosed at a late-stage, ovarian cancer has less than 50% survival rate. This increases to 90% survival rate if detected early. Patients Rising NOW supports the bipartisan reauthorization and expansion of Johanna’s Law (H.R.4412).
- Patients Rising Now takes a closer look at the impact of federal funding on the reduction of health disparities and improved outcomes for patients. Our recent podcast episode featured Ovarian cancer survivor, Randalynn Vasel, the Co-Producer of Sips with Survivors, and Runsi Sen, the founder of Ovarcome, who shared the signs and symptoms of ovarian cancer that all women should know.
- Big Takeaways: your annual women’s health exam does not test for ovarian cancer, and many health providers use age as a benchmark for testing and diagnosis.
- Patients Rising NOW Supports Telehealth Legislation: The pandemic proved that telehealth offers tremendous benefits to patients and can help close the gap for health inequities. CMS is now contemplating next steps for the temporary expansion of Medicare funding for telehealth services, which currently lasts through the end of 2021 but could be extended through December 31, 2023. Of the 40 bills that have been introduced, many include similar protections: interstate medical licensure compact, flexibility in originating sites, parity of coverage and reimbursement for in-person and telehealth visits. Patients Rising NOW supports immediate legislative action.
- How ICER Got Eczema Treatments Wrong: On August 17, 2021, ICER issued a Final Evidence Report on the clinical and cost-effectiveness of new treatments for Eczema (atopic dermatitis). This chronic condition affects roughly 11-15% of children and 7- 10% of adults in the U.S and costs (including health care) $5.3 billion a year. ICER concluded that Eczema treatments are overpriced and recommended steep discounts for at least three of the five therapies. On behalf of patients, we are raising flags with these findings. Chiefly, ICER’s analysis is woefully underinclusive, devalues these treatments and fails to consider factors that impact overall quality of life.
- FDA Approves Biosimilar for Insulin; What that Means for Diabetics: The FDA has approved the first biosimilar product for insulin. (Here is the FDA fact sheet that explains interchangeable biosimilar product.) This interchangeable biosimilar for insulin is for adults with type 2 diabetes and children and adults with type 1 diabetes. According to research published in 2020, the manufacturer price of insulin in the U.S. is dramatically higher than other developed countries. Patients Rising NOW supports the action taken by the FDA because this product is expected to substantially reduce the cost of insulin for patients.
- Deskside Briefing for Capitol Hill Staff: In August, Patients Rising hosted two deskside briefings to examine all sides of the drug pricing debate. On August 9, 2021, Dr. Paul Langley, Director of Research at Maimon Research and Dr. Bob Goldberg, Co-Founder and Vice President of the Center for Medicine in the Public Interest, provided a briefing to Congressional staff on the Quality Adjusted Life Year (QALY).
Our final event in our summer learning series featured a conversation with Patients Rising Executive Director, Terry Wilcox and Robert Popovian, a clinical pharmacist, on the medical supply chain impact on the end user: patients.
- Voices Across America: Patient Stories Patients Rising Now invites you to explore patient stories in your district. Our tool allows you to examine topics by district or access to care and affordability issues. Please be sure to share this resource with your local offices to encourage constituents to share their Stories.
- Patients Rising Podcast: How Drug Patents Work: Hosts Terry and Dr. Bob examine patents with Jaci McDole, Senior Policy Analyst, from the Information Technology and Innovation Foundation,
- Other August weekly episodes:
- Pediatrician on Delta + Back to School
- Rising Costs of Health Insurance
- Pink Socks + Accelerated Approval for Drugs
- Patient Correspondent Melissa Talwar from California, Congressional District 27 (37:43) shares the challenges of living with fibromyalgia and why the community needs federal assistance to advance research and medical education around the illness.
- Ovarian Cancer: What Women Need Congress to Do
- You can listen to these episodes and follow the Patients Rising Podcast via your favorite podcast app, like Apple Podcast, Spotify, Google Podcast
- Patients Rising Podcast is published every Friday to update patients on issues in Washington that affect them. Each week patients are interviewed on policy challenges associated with managing and treating their disease, along with new information on the latest health issues, legal help for patients, and other resources.
- Other August weekly episodes:
Every month I hope to add value to your inbox by providing a look at legislation and regulation through the patient lens. If Patients Rising can be of assistance to your office, please reach out to me directly via firstname.lastname@example.org or at 202-750-4331.
Patients Rising is a 100,000-member organization of patients with chronic illness. We work with patients to advocate for access to the treatments, innovations, and care they need, through our numerous patient programs and initiatives, including Patients Rising Concierge, Patients Rising University, Voices of Value, and Patients Rising NOW, educating patients about the legislative process, and empowering them to advocate for reforms and legislation aimed at advancing patient access, affordability, and transparency in healthcare.