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Contributor: American Patients Are Not Free to Make Their Own Decisions


Americans with disease and disabilities are disproportionately affected by public policy, with their health outcomes at the complete mercy of lawmakers.

If there is anything the pandemic has taught us, it’s that there are groups of Americans who pay a deep, personal price for US policy. Americans with disease and disabilities are no exception—they are disproportionately affected by public policy, with their health outcomes at the complete mercy of lawmakers.

This collective group of Americans are not actually in the minority. Around 133 million US adults have a chronic illness. Six in 10 adults have a chronic condition that forces them to seek regular medical treatment, and 4 in 10 have 2 or more chronic conditions. That’s a significant block of voters.

This community interacts with the American health care system every single day, feeling the direct effects of health policies made in Washington, DC. These patients feel the effects of insurance waiting periods, switching of their medications by insurances for nonmedical reasons, supply chain inefficiencies, declined coverage, blocked access to new interventions and treatments, and on and on. They have earned their seat at the policy table.

Patients must have the right to make health care decisions for themselves. But they are entangled in a complicated system of insurance design and profit. They do not get to determine their own health outcomes, their path forward forced on them by profiteers stationed all along the supply chain. They feel powerless as insurance companies dictate to them what medicines and treatments they can take, regardless of what they and their physicians determine to be the best course of treatment. It’s not easy to be a patient.

Some of these patients and their caregivers are on the Hill this week, sitting in congressional offices, urging their representatives to recognize their rights to access affordable health care. They are asking for simple health reforms that could remove large barriers standing between them and their health care.

Patients want their representatives to support policies, like the newly introduced Protecting Health Care for All Patients Act of 2022 (H.R. 7634), that would prevent the use of discriminatory health metrics in federal programs. Metrics like the quality-adjusted life year have become the de facto measurement tool in policy-making, and essentially values a year in the life of a person who has a chronic disease as worth less than a year of life for someone at full health.

In addition, there is the Safe Step Act (H.R. 2163/S. 464), which is meant to ensure patients can safely and efficiently access the best treatment for them, simply by creating a transparent process to exempt a patient from “step therapy,” when it is demonstrated a patient needs the specific medicine prescribed by their health care provider and not the insurer’s preferred drug.

Patients also want lawmakers to support the BENEFIT Act of 2021 (H.R. 4472/S. 373), which requires the FDA to include information developed by a product sponsor or a third party, such as a patient advocacy organization or academic institution, as part of the benefit/risk assessment for new drugs. It also requires the FDA to disclose whether and how patient experience and patient-focused drug development data were used in the assessment.

Developers of other products listen to their customers before they offer their goods for sale. They gather their input, adjust their designs, and continue to make changes as users offer feedback in real time. It’s common everywhere except when it comes to the way we assess new medical treatments.

These reforms would begin to establish the patient’s voice in the process. They are common-sense solutions that would have a direct impact on and improve patient outcomes. There is a lot of talk in Washington these days about personal freedoms. It’s time to extend that conversation to patients and their rights.

Give patients freedom to make the choices about their care that are best for them. Recognize that anything that ends with the patient must start with the patient.

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