Opinion: We all must advocate for health care policies that work for patients

Connie Farrow

An elderly grandfather already struggling with COPD and Parkinson’s was denied treatment for an aggressive cancer because he was deemed “too expensive” to treat by his Medicare Advantage provider.

The sad reality is patients often face barriers to accessing the advanced and innovative medical care available in our health care system because the current system prioritizes the desires of special interests rather than patients. From large insurers taking advantage of programs designed to help patients get access to medicines and care, to government policies that stifle innovation and hope for those with chronic illness, the current system simply doesn’t work for patients and consumers.

A U.S. News ranking of “Best States” puts Missouri at 35 out of 50, but our state finished among the lowest for health care at No. 45, based on health care access, quality and public health. Factors landing Missouri in the basement include the following: 12.2% of our population, compared with 11.3% nationally, do not have health insurance; and 36.3% of us, compared with 33.9 % nationally, are considered as people who have obesity. Missouri’s preventable hospital admissions among Medicare patients is also higher than the national average at 2,994 per 100,000 patients, compared with 2,765 nationally.

The reality is that many of the policies that affect how we access medicine and care are determined by our elected representatives, who are often swayed by the vocal. Keeping our heads down and staying silent can have grave results.

For example, Congress is considering legislation, H.R. 485, known as the Protecting Health Care for All Patients Act, that would benefit the elderly grandfather who received the devastating cancer diagnosis by banning the use of arbitrary cost-effective metrics like the quality-adjusted life year, or QALY.

Payers, like Medicare and insurance companies, use QALY metrics to prioritize certain conditions when allocating health resources, making it easier to deny coverage of treatment for patients in need. These discriminatory value metrics have serious consequences, potentially resulting in a death sentence for a patient who fails to achieve a maximum QALY score.

Government price-setting measures like those in the Inflation Reduction Act also bear watching. They stifle innovation and falter hope for patients with rare diseases and chronic illnesses. This is because the IRA essentially empowers the federal government to determine the value of a medicine or treatment, thereby forcing drugmakers to negotiate over prices set by government bureaucrats. While this approach sounds good in theory, it overlooks all the factors that generate pharmaceutical innovation. For instance, the IRA ignores the facts that new drugs are expensive to develop and that companies rely on profits from existing drugs to fund their development process. By lowering the expectation of revenue from the successful development of new medicines, critical investor dollars that also help pay for clinical students could go elsewhere.

Stifling development will have catastrophic consequences for patients and their doctors, leaving them with fewer viable treatment options and worsening health outcomes precisely when they need solutions most.

There is no question about it. Consumers and patients, particularly ones living with rare and chronic diseases, must have access to a variety of medicines, therapies and health care options.

These are only scratching the surface of important public policy issues that can affect our health and the health of our loved ones. It’s time for all of us to get informed, develop a relationship with our elected representatives and become advocates. A strong chorus of dedicated voices speaking out on behalf of patients and consumers on these issues will help to ensure obstacles don’t go unchecked and stand in the way of affordable and accessible patient care.

Together, we can improve the health care experience and lighten the emotional and financial stresses that occur when our health or the health of someone we love fails.

Connie Farrow is executive director of Patients Come First-Missouri, a consumer movement aimed at putting patients and consumers back at the forefront of health care through advocacy, science, education and collaboration. She can be reached at cfarrow@patientscomefirst.com.