Happy New Year, 

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.

Patients Rising NOW Supports FDA Commissioner Nominee Dr. Robert Califf: Patients Rising NOW’s pro-patient agenda addresses critical priorities before the FDA and Congress. Our organization supports Dr. Califf and encourages him to create pathways for states to work together, accelerate approval for rare and chronic disease treatments and improve clinical trials.  

Supporting the Orphan Drug Tax Credit (ODTC): An estimated 50 million Americans live with autoimmune and immune-mediated diseases. Since enacted in 1983, the Orphan Drug Act 652 drugs for 1,006 rare diseases have been approved. Unfortunately, the Build Back Better legislation would limit incentives for companies to invest in orphan drug development by granting the tax credit approval only for the first use. We encourage Congress to protect and invest in these incentives. 

Solutions for Benefit Design: How to Reduce Low-Value Care: A service or treatment that provides no or little benefit to the patient is a low-value service. In the U.S., low-value care accounts for more than $340 billion annually, driving up the overall cost of healthcare. Some examples include over-prescription, over-screening, and unnecessary procedures. Patients Rising NOW support solutions that can help reduce low-value care. Specific to congressional action, we support measuring low-value care in claims data from Medicare and private payers.   

Prior Authorization Can Disrupt Medically Necessary Care: Improving Seniors’ Timely Access to Care Act: Insurance restrictions, such as prior authorization result in insurance company representatives reviewing and approving a doctor-prescribed treatment or service before it is covered. Patients Rising Now supports the Improving Seniors’ Timely Access to Care Act of 2021. This bipartisan legislation would streamline the prior authorization approval process, put in place safeguards, and modernize Medicare Advantage. 

When it comes to Drug-Pricing Legislation, AARP has a Conflict that Could Hurt Seniors: Through the Build Back Better plan, Congress could pass drug-pricing measures that would hurt seniors and help insurers. And AARP has a conflict; the organization and insurance companies sell branded plans. To learn more, check out my op-ed that ran in the Chicago Tribune and in several other daily papers over the holidays, including: The Miami HeraldThe Sacramento BeeTribLiveThe Sun-SentinelThe Fort Worth Star-TelegramThe Charlotte Observer, and The Kansas City Star. 

Patients Band Together for Healthcare Change: Listen to patient-centered discussions on The Chronic Connection Podcast and the MS Podcast for the patient POV on topics such as insurance design and advocacy. 

Patients Rising Podcast: On our latest episode, the Politics of Healthcare in 2022, a panel of Republican and Democrat strategists provide an outlook for healthcare policies in 2022.  

  • Other recent weekly episodes:
  • Hear from patient correspondent Stephanie Tomlinson from Minnesota’s Congressional District 3 (38:04). Stephanie’s son, Theodore, lives with cerebral palsy and mitochondrial disease. Through a genetic study, they discovered that several of Theodore’s medications were doing more harm than good. Stephanie advocates for H.R. 4393, which will help more patients like Theodore by expanding Medicaid coverage to DNA sequencing, allowing providers to take a more proactive approach to care. 
  • You can listen to these episodes and subscribe to Patients Rising Podcast via your favorite podcast app, like Apple PodcastSpotifyGoogle Podcast 
    • Patients Rising Podcast is published every Friday with the purpose to update patients on issues in Washington that affect them. Each week patients are interviewed on policy challenges that come with treating their disease, along with new information on the latest health issues and legal help for patients.

Every month I will add value to your inbox by providing a patient lens to legislation and regulation. If Patients Rising can be of assistance to your office, please reach out to me directly via twilcox@patientsrising.org or at 202-750-4331.

Take care,