By Leah Poffenberger, Senior Manager, Communications  

Millions of Americans, especially those with chronic health conditions, could be impacted by proposed policy changes related to Medicare, Medicaid, and health research. The National Health Council (NHC) believes that the patient voice must be prominent at every level of health care decision making, and amplifying the experiences of patients is more important than ever.  

On March 4, the NHC convened a briefing to highlight the voices of patients to decision-makers on Capitol Hill. The briefing featured four patient advocates speaking on issues related to health care access and affordability: John Linell, COPD Foundation state advocacy leader for Wisconsin; Leah Howard, President & CEO of The National Psoriasis Foundation (NPF); Katie Schubert, President & CEO of the Society for Women’s Health Research (SWHR); and Kenny Mendez, President & CEO of the Asthma and Allergy Foundation of America (AAFA). Together, they provided valuable insights into the life-changing and cost-saving benefits of investing in health care.  

After being diagnosed with COPD at 49, Linell has become an expert at sharing his story to advocate for patients with COPD and other chronic conditions. Over 14 million Americans have undiagnosed COPD. Linell stressed the importance of providing these and many other people with access to timely diagnosis and proper treatments, both to save lives and reduce the long-term burden on the health care system. Cutting funding for things like research and awareness campaigns costs more money in the long run, he says. Linell has end-stage COPD but continues to travel to Washington, D.C. from Wisconsin to speak directly to lawmakers, citing the immense impact listening to patients can have. “Please listen when advocates come to your office,” he said, appealing to congressional staff attending the briefing. “In the long run, we can save lives and billions of dollars for Medicare.”  

Howard described how research into psoriatic diseases has changed the lives of patients over the past 20 years but highlighted the challenges of access and affordability that remain. “How do we balance a sustainable health care system without letting people get left behind?” she asked. The NPF is attempting to answer this question by assessing what the patient community needs and what challenges they can address. One issue many people in the psoriatic disease community face regularly is improper step-therapy protocols, which keep patients from accessing the correct medications in a timely manner. Howard pointed to the need for Congress to pass the Safe Step Act, eliminating this barrier to care. She described the need to oppose any cuts to Medicaid, which would eliminate a critical lifeline for more than 80 million people, and the importance of continuing ACA tax credits and extending telehealth flexibilities.  

Schubert spoke on the role of the federal government in innovation, especially for treatments that aren’t seen as lucrative investments for manufacturers. The federal government can impact the development of needed treatments through incentives like the Rare Pediatric Disease Voucher Program, which is currently up for reauthorization. This program has been in place for many years, ensuring those who need treatment most have access. Schubert also described the need for a “robust and sustainable infrastructure that researches and innovates where the market does not.” Researchers at federal institutions like the NIH, the VA, and the FDA have already made discoveries that have changed the lives of millions of Americans. Schubert asked that Congress keep this research infrastructure strong to do work industry isn’t ready to do.  

To wrap up the panel, Mendez discussed the role of health care nonprofit organizations, like AAFA, which serves over 100 million Americans who have some kind of allergic disease. “The nonprofit sector’s power for good is immense,” he said. For example, a mission of AAFA is to reduce the incidence of asthma and asthma attacks, which kill 10 people each day and costs the health care system billions each year. Community-based programs supported by AAFA have reduced asthma attacks by up to 50 percent in those communities and improved work and school attendance. Mendez also highlighted the role of nonprofits in the economy as the third largest employment sector, contributing over $65 billion in payroll taxes that are not covered by tax exemptions, and the importance of a strong nonprofit ecosystem to improve patient health.  

The NHC remains committed to amplifying the voices of these and other advocates to ensure that the patient perspective is reflected in health care policy decisions. We will continue to partner with patients and patient organizations like the COPD Foundation, NPF, SWHR, and AAFA in the pursuit of a health care system that puts patients first.