Opinion – Congress Should Ask: Does Health Care Policy Put Patients First?

As the U.S. faces many urgent and emergent challenges, including COVID-19 and the economic downturn the virus has caused, Congress clearly has a lot on its plate. In this chaotic climate, lawmakers will need to carefully prioritize the issues they address, balancing attention to crisis with action on long-needed reforms. Advocates for the chronically ill are urging Congress to ensure that patient access to quality, affordable health care remains at the top of their priority list.

Because the socio-economic health of the country relies on the health of our citizens, ensuring health care access for all Americans must always remain a top priority. As the 117th Congress looks at the critical issues of the day, it will be important for them to keep access to affordable, high-quality, patient-centered care at the top of their priority list. This includes addressing pressing policies and proposals that directly impact chronically ill patients’ ability to get the care they need and deserve.

First and foremost, as Congress considers addressing the persistent need for health care reform, we encourage it to always frame discussions around one key question: How will this policy ensure patients have access to the best care possible? This, of course, sounds like an obvious approach, but with many different health care stakeholders with competing interests vying for attention, focus on patient-centered policy has been known to get blurry.

To ensure all policy moves patients toward better care, Congress should endorse only policies that do not increase patient costs or limit access to the treatments they need. Specifically, we urge Congress to abandon some of the policies that were included in the 2019 bill, HR3, that proposed allowing the government to set the price of prescription medications since they would ultimately result in more restricted access to treatments for patients.

Reforms to Medicare being weighed by the administration should benefit Medicare beneficiaries, not simply aim to cut costs at the expense of patients. Measures that would limit treatment options should be avoided, including the repeal of non-interference, which would ultimately lead to the implementation of the restrictive formulary. For seniors and patients with chronic conditions, multiple treatment options are integral to maintaining effective care. The decision on how best to treat an illness must remain with patients and doctors, not government.

A proposal that also threatens access is on the horizon, “Foreign Reference Pricing.”  As the Biden administration explores reference pricing, it should consider if this will limit innovation and access to future cures and medications for patients. If approved, this would allow the Department of Health and Human Services to set the price of medications based on the weighted average price of six other countries. While low patient out-of-pocket costs may drive the view that coverage in some of these countries is better, the proposal does not take into account access under this pricing model, namely that patients will have fewer drug options. What is the use of lowering costs if chronically ill patients can no longer get the treatments they need to live quality, productive lives?

Another policy that harms the ability of patients to afford their care and which must be reformed is the copay accumulator program. Millions of patients with chronic disease rely on copay assistance programs to help cover out-of-pocket costs for their medications. Unfortunately, copay accumulator programs, which disallow patient copay assistance from counting toward patient deductibles, will raise costs for vulnerable patients who rely on that assistance to reduce the amount they must pay out-of-pocket and help them afford their medications throughout the year.

Prescription drug rebate program reform is another issue on which Congress should focus to help ensure patients can afford treatments. Unlike most consumer rebate programs, prescription drug rebates, which are negotiated with drug manufacturers by companies known as Pharmacy Benefit Managers (PBMs) on behalf of health insurance companies, do not benefit patients at all. Instead, billions in prescription drug rebate dollars go into the pockets of health plans and PBM middlemen while millions of Americans continue to struggle to pay for the medications they need. Effective reform of the rebate program will ensure that the majority of rebate dollars are passed directly on to patients so they can afford their medications and are no longer forced into rationing medications and even going without.

To manage their chronic conditions, patients not only need affordability, but they must also have broad access to different types of treatments. Patient access to treatment has been more threatened now than ever before. Thankfully, we’ve seen that advocating against harmful policies can make a difference.

This legislative session will require much focus, but it also brings forth new opportunities to advocate for some of the most vulnerable among our population. We urge Congress to put patients at the center of all health care policy actions so the well-being of all patients, including the chronically ill, can be advanced. The U.S. is struggling with a number of recent challenges, but the ongoing needs of the chronically ill must not go by the wayside.

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