WASHINGTON – Patients Rising Now today released the latest health policy developments for Patient Advocates.

Here’s what you need to know this week: 

  • Congress is under a deadline to pass a government funding bill this week, preventing the government from defaulting on its loans and keeping key government programs operational.
    • Included in this measure is funding for public health programs, including COVID-19 relief.
    • Why this matters: If the Senate and House cannot pass the bill by Thursday, September 30th, key programs will not be funded. However, mandatory spending services such as Medicare and Medicaid will continue.
  • The U.S. House of Representatives is planning to vote on the Senate’s infrastructure bill this week.
    • Included in the infrastructure bill is a proposal to delay a rebate rule for Medicare Part D.
    • Why this matters: The rebate rule would allow rebates to be passed to patients at the pharmacy counter. Delaying this rule would prevent Medicare Part D patients from receiving rebates on the medications they need, and is a step backwards for reducing out-of-pocket costs.
    • Patients Rising Now is Urging Congress to: Protect rebates for patients at the point-of-sale and reject this rebate rule delay. Infrastructure funding should not come at the expense of patient out-of-pocket savings.


  • The U.S. House is working to assemble enough votes to pass the “Reconciliation Bill,” also called the “$3.5 Trillion Social Spending Bill” or the “Build Back Better Act.”
      • Included in this spending bill:
        • Amendment to the Orphan Drug Act (Section 138141) to limit the number of rare disease drugs that will qualify for tax credits.
        • Why this matters: This eliminates a key incentive for drug manufacturers to pursue research and development of life saving treatments for rare disease patients.
        • Patients Rising Now is urging Congress to: Protect innovation for rare disease patients by keeping the Orphan Drug Tax Credit in tact. 
  • Bolster Medicaid funding for long-term care services.
    • Why this matters: This would allow for more individuals to be eligible for home and community based services, raise wages for employees serving this population, and increase support for caregivers.

Patients Rising is encouraging all Patient Advocates to call their U.S. Senator and Members of Congress to tell them that the 144 Million Americans with chronic disease deserve a voice!

Find your Member of Congress and how to contact them here.