NBCC Senate Testimony on Drug Pricing

April 7, 2022

Thank you, Chairman Wyden, Ranking Member Crapo, and Members of the Senate Finance Committee, for the opportunity to submit a statement for the record of the hearing this Committee, held on March 16, 2022: “Prescription Drug Price Inflation An Urgent Need to Lower Drug Prices in Medicare.”

My name is Fran Visco, and I am a breast cancer survivor, a wife, a mother, a lawyer, and President of the National Breast Cancer Coalition (NBCC). My statement represents the hundreds of member organizations and thousands of individual members of the Coalition. NBCC is a grassroots organization dedicated to ending breast cancer through action and advocacy. The Coalition’s primary goals are to advocate for federal funding for breast cancer research and collaborate with the scientific community to implement new models of research, improve access to quality health care, treatments, and breast cancer clinical trials for women and men; and expand the influence of breast cancer advocates wherever breast cancer decisions are made.

Congress must help put an end to drug prices that create financial toxicity for patients, adversely disrupt the health care system, and have little relation to value to human life. The U.S. spends more than double what other industrialized countries do per capita on prescription drugs, and 79% of Americans agree that the cost of prescription drugs is too high. It is not just a belief. It is reality. Medical debt is the largest source of personal debt in the U.S. Two-thirds of all personal bankruptcies are due to medical bills. About 115 million Americans under 65 report issues with medical bills and have skipped medical care due to cost.[1]

Because our mission is to end breast cancer, we focus specifically on oncology drugs, and the trends there are troubling. A JAMA study, published in July 2021, found that between 2009 and 2019, 74% of the 65 cancer drugs the group looked at increased in price faster than the rate of inflation. The median monthly treatment cost rose from $5,790 in 2009-10 to $14,580 in 2018-19.[2] In 2019, national out-of-pocket expenses in the U.S. for female breast cancer were $3.14 billion[3]. Most troubling is that there is generally no relationship between a drug’s clinical effectiveness or reducing mortality and its price or subsequent price increases. We will not end breast cancer or any disease until everyone has access to affordable, effective interventions.

Affordable access to prescription drugs has been a priority for NBCC since its inception. From advocacy for access to quality care for all to drug pricing workshops to interactions with the FDA and public statements on specific drug pricing, NBCC has been a voice for value, evidence-based approaches, and affordable, accessible treatments. The government’s ability to negotiate drug pricing is but one necessary reform to help save lives.

A recently published study found non-initiation (patient did not fill their prescription) for 30 percent of prescriptions written for anticancer drugs among many Medicare part D beneficiaries. Many Medicare Part D beneficiaries must pay a percentage of the price for high-priced drugs for each medication fill. Many beneficiaries typically pay hundreds or thousands of dollars for a single fill. The study’s findings support current legislative efforts to increase the accessibility of high-price medications by reducing out-of-pocket expenses under Medicare Part D.[4]

The purpose of a healthcare system must be to do what is best for peoples’ lives. The system must be designed to achieve that goal. At NBCC, we believe that value to patients should be the cornerstone of the conversation about drug pricing. Today, U.S. drug manufacturers enjoy monopolistic market power and set prices as high as possible. As a result, many of their drugs launch with huge price tags despite little added value or innovation.

Some recent examples of this in breast cancer include:

  • TECENTRIQ® (atezolizumab) was approved via accelerated approval for first-line treatment of advanced or metastatic triple-negative breast cancer (TNBC) in 2020, using the surrogate endpoint of progression-free survival (PFS) as the primary endpoint. The list price of TECENTRIQ® is $13,860 per month.
  • On April 22, 2020, the FDA granted accelerated approval to sacituzumab govitecan-hziy (TRODELVY, Immunomedics, Inc.) for metastatic triple-negative breast cancer based on a single-arm trial (not a randomized trial). The approval was based on the surrogate endpoint of response rate. The list price of TRODELVY is $6,600 per month.

While drug price negotiation is critical to providing access to quality health care to all Americans, it is just a start. NBCC believes that the next conversation in drug pricing must be about value-based drug prices so that Americans have access to drugs that actually benefit them at prices they can afford.

To this end, NBCC adopted the following five principles for value-based drug pricing[5]:

Everyone Must Benefit from Drug Pricing Reform

Drug pricing reform must be comprehensive. New and existing drugs must be subject to pricing reform, and private and government-provided insurance coverage must be included.

Drug Prices Must Reflect Value to People’s Lives

Health care consumers generally and breast cancer advocates more specifically want drugs that significantly extend the length and/or quality of their lives. The reality is that most drugs coming to market today do neither of these but do carry significant financial costs.

NBCC urges reform that results in an evidence-based system where drugs are priced based on how well they improve people’s lives. Value-based approaches to drug pricing can encourage drug makers to produce more of what people need, drugs that will enhance health and/or quality of life.

Independent and Fair Assessments Must Determine Value

Independent analyses should inform drug value assessments. Organizations conducting assessments must be independent, free of any conflicts of interest, and have a transparent and reviewable methodology.

The Process Must Include Educated Patient Advocates

Educated patient advocates who represent a constituency must have a meaningful seat at the table in determining value in all aspects of drug pricing policy, including evaluation and negotiation.

Patient advocates must be centered in the drug pricing discussion. Educated patient advocates can bring a truly comprehensive view to the table on what matters most to a healthcare system focused on ‘peoples’ lives.

Reform Must Include Strong Enforcement Mechanisms

Drug price policies must include strong, meaningful, and effective enforcement mechanisms.

NBCC will continue to work with you on our shared goal to make certain that effective treatments are also affordable and accessible. The ability to negotiate drug prices under Medicare is a necessary step to that end.

Thank you again for the opportunity to submit testimony. We look forward to working with the Senate Finance Committee on this issue of critical importance to American consumers.

[1] Breaking News: Medical Debt and Your Credit Report, Oncolink, March 23, 2022

[2] July 1, 2021 Analysis of Launch and Post approval Cancer Drug Pricing, Clinical Benefit, and Policy Implications in the US and Europe

[3] CDC, Annual Report to the Nation on the Status of Cancer, October, 2021

[4] Many Medicare Beneficiaries Do Not Fill High-Price Specialty Drug Prescriptions, Health Affairs, April 2022.

[5] Comprehensive Reform to Lower Prescription Drug Prices, Madeline Twomey, Center for American Progress, January 29, 2019

How Medicare Could Get Better Prices on Prescription Drugs, Kevin Outterson and Aaron S. Kesselheim, Health Affairs Vol. 28, 2009