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Letter to Congress: Drug Pricing Reform Should Protect Patients

In a letter to Congress, the Chronic Care Policy Alliance (CCPA) was joined by 35 organizations expressing concerns with the drug pricing reform text in the reconciliation package. Read the full letter:

Dear Majority Leader Schumer, Chairman Wyden, and members of the United States Congress,

The undersigned organizations express our serious concern that the Senate’s new prescription drug pricing reform proposal does not do enough to help Medicare beneficiaries afford their medicines. We represent patients from across the United States living with chronic and serious diseases as well as in communities with unmet medical needs.

We have three main issues:

  • The proposed legislation does not help all Medicare beneficiaries
  • It puts future treatment advances at risk
  • It fails to address significant cost-drivers in the marketplace that lead to patients experiencing high out of pocket costs and difficulty accessing care

First, although the bill includes a Medicare Part D out-of-pocket cap and smoothing for Medicare beneficiaries, these proposed reforms help only a small percentage of Medicare beneficiaries—those that hit the $2,000 catastrophic cap. Policies are needed to help reduce out-of-pocket costs for more Medicare beneficiaries. In earlier versions of the legislation, there were improvements to lower cost sharing below the catastrophic cap and a copay cap on insulin. Unfortunately, both provisions have been removed from the new proposal. These policies or other policies that generate significant out of pocket savings below the $2,000 catastrophic cap should be advanced so that it covers a larger percentage of Medicare beneficiaries.

Second, the price setting policies contained in this legislation have limited benefits to patients and could endanger future treatments. It is concerning that analysis from the Congressional Budget Office (CBO), analysts, and economists largely find that these price setting policies will result in fewer treatments coming to market. While the CBO and other studies differ in the exact number of fewer new treatments, their findings point in the same direction: fewer new treatments for patients. For patients with chronic conditions, new treatments can be life changing; cures, new treatments, or simply treatments with fewer side effects can have dramatic impacts on the health and wellbeing of patients with chronic conditions. No advancement is too small for patients. Importantly, breakthrough treatments for communities or diseases with little to no current treatment options will save lives.

Finally, the Senate is proposing to repeal the rebate rule, which would have ensured that cost-savings and rebates obtained by insurers and Pharmacy Benefit Managers are directly passed along to patients. This policy change would make significant strides towards prioritizing patients over insurance companies and middlemen. By repealing the rule in this package, beneficiaries will continue to pay more than they would have if the rebate rule was left in place. It is disconcerting that the cost borne by patients may even be more than their health insurance is paying for their medicine.

While we appreciate Congress’ efforts to lower healthcare costs, the proposed policies within the reconciliation package do not help most patients, while advancing policies that would lead to fewer treatments for patients. We ask that you revise these policies and prioritize patients by focusing on reducing their out-of-pocket costs for the treatments upon which they rely while also protecting their access to medications that will improve their lives.

Should you have any questions or comments, please contact Liz Helms, Founding Director, CCPA at lizh@chroniccarealliance.org. Thank you very much.


Chronic Care Policy Alliance (CCPA)


Alliance for Aging Research


American Behcet’s Disease Association (ABDA)

Applied Pharmacy Solutions

Autoimmune Association

Black, Gifted & Whole Foundation

California Health Collaborative

Caregiver Action Network

Center for Medicine in the Public Interest

Coalition of Texans with Disabilities

Global Colon Cancer Association

Health Equity Collaborative

Healthy Men

Hereditary Neuropathy Foundation

HIV + Hepatitis Policy Institute

ICAN, International Cancer Advocacy Network

International Foundation for AiArthritis

Men’s Health Network

MLD Foundation

Multiple Sclerosis Foundation

National Hispanic Council on Aging

National Hispanic Medical Association

National Oncology State Association, Inc.

Neuropathy Action Foundation

Nevada Chronic Care Collaborative

Partnership for Innovation & Empowerment

Partnership to Fight Chronic Disease

Patients Rising Now

PDL1 Amplifieds

Rare Access Action Project

Schizophrenia & Psychosis Action Alliance

Southern Christian Leadership Global Policy Initiative (SCL-GPI)

The Exon 20 Group

The Latino Coalition

The National Puerto Rican Chamber of Commerce

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