Americans with illness and disability are disproportionately affected by public policy, and their health consequences are left to the full mercy of lawmakers.
The only thing the pandemic has taught us is that there is a group of Americans who are paying a deep personal price for US policy. Americans with illnesses and disabilities are no exception. They are disproportionately affected by public policy, and their health consequences are completely at the mercy of lawmakers.
This group of Americans isn’t really a minority. Approximately 133 million US adults suffer from chronic illness. Six in ten adults have chronic illnesses that require regular treatment, and four in ten have two or more chronic illnesses. It’s an important block of voters.
The community interacts daily with the American healthcare system, feeling the direct impact of the healthcare policy in Washington, DC. These patients are experiencing the effects of insurance waiting periods, insurance dosing switching for non-medical reasons, supply chain inefficiencies, poor coverage, and blocking access to new interventions and treatments. They won a seat at the policy table.
Patients must have the right to make their own healthcare decisions. However, they are involved in a complex system of insurance design and profits. They cannot determine their own health consequences. Their progress was imposed on them by profiters located throughout the supply chain. They feel helpless as the insurance company tells them what medicines and treatments they can take, regardless of what they and their doctor have decided to be the best treatment policy. Becoming a patient is not easy.
Some of these patients and their caregivers are on the hill this week, sitting in parliamentary offices and urging their representatives to recognize their right to access affordable healthcare. .. They want simple health reforms that can remove the big barriers that stand between them and their health care.
Patients want their representatives to support policies such as the newly introduced 2022 Health Protection Act for All Patients (HR 7634) to prevent the use of discriminatory health indicators in federal programs. is. Metrics such as quality-adjusted life years have become a de facto measurement tool in policy making, and basically a year of life for a person with a chronic illness is worth less than a year for a person in perfect health. I evaluate that there is.
In addition, there is the Safe Step Act (HR 2163 / S. 464). This means giving patients safe and efficient access to the best treatments by simply creating a transparent process to exempt them from “step therapy”. When it is proven, patients need certain medications prescribed by their healthcare provider and do not need the insurance company’s favorite medications.
Patients also want legislators to support the 2021 BENEFIT Act (HR 4472 / S. 373). This requires the FDA to include as part information developed by product sponsors or third parties such as patient advocacy groups and academic institutions. Benefit / risk assessment of new drugs. The FDA also needs to disclose the patient’s experience and whether and how patient-focused drug development data was used in the assessment.
Developers of other products listen to their customers before selling them. As users provide real-time feedback, they collect input, adjust their designs, and keep making changes. It is common everywhere, except how to evaluate new treatments.
These reforms will begin to establish the patient’s voice in the process. These are common sense solutions that directly affect and improve patient outcomes. There’s been a lot of talk about personal freedom in Washington these days. It’s time to extend the conversation to patients and their rights.
Gives the patient the freedom to choose the best care for them. Recognize that anything that ends with a patient must begin with the patient.
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