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The LLS Blog

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How LLS and Advocates Helped Secure Landmark Health Reforms

By Brianna Wilson, Senior Manager, Advocacy Communications |
"We did it" text with confetti

Today, cancer patients—and others with other chronic conditions—are breathing a collective sigh of relief. After years of relentless efforts by LLS staff and blood cancer advocates, President Biden just signed into law the Inflation Reduction Act and its key health provisions which will make healthcare more affordable for millions.

The expansive legislation covers many areas, but LLS and the patients we work with focused their advocacy on two key policies that will benefit patients:

  • A new $2,000 annual cap on Medicare patients’ out-of-pocket prescription drug costs, starting in 2025. The new policy also allows patients to spread costs over the year. Today, many patients spend $10,000 or more out-of-pocket per year for a single drug, and they often owe thousands at the start of their plan year. Medicare patients will see their Part D drug costs capped at around $3,400 beginning in January 2024.
  • A three-year extension of tax credits that reduce premiums for those who buy health insurance through the HealthCare.gov market through December 2025. These credits have dramatically lowered or even eliminated health insurance premiums for millions of consumers since 2021.

Both reforms were top priorities for LLS’s Office of Public Policy (OPP) because they directly impact patients’ ability to get lifesaving healthcare. In just the last two years, volunteer advocates working with LLS have held hundreds of meetings with members of Congress and their staff on these issues—and sent more than 29,000 letters to federal lawmakers urging action.

LLS is grateful to volunteer advocates who shared personal stories about their experiences with legislators – including sometimes painful memories and hardships of their cancer journey. Their stories are powerful and sometimes are the only way to get through to policymakers. These reforms are a win for advocates—and all the other patients they’ve fought for.

Capping out-of-pocket costs for older adults

Sharon Clark, an LLS advocate and myeloma patient in Oklahoma, has an all-too-common story. She went months without taking her lifesaving because she could not afford it, despite being covered by Medicare. She’s not alone: LLS research reveals that a typical myeloma patient with Medicare, for example, spends more than $14,000 out-of-pocket each year on their prescription drug treatment. And more than 40% of Medicare enrollees abandon their cancer treatments when they are required to spend more than $2,000 out-of-pocket.

Many blood cancers can be managed as chronic conditions if patients have access to daily oral medication. Unfortunately, these specialty drugs may be extremely expensive. Patients with Medicare owe a relatively small percentage for those pricey drugs – 5% – but that’s still a massive sum when some treatments have a list price of $100,000 or more each year. Today, there is no limit to what patients covered by Medicare might owe for their treatment.

LLS has spent nearly a decade urging lawmakers to cap Medicare patients’ drug costs. New reforms will limit annual out-of-pocket costs to $2,000 a year, making it easier for older adults and those with disabilities to afford their lifesaving medications.

How we did it

The achievement is a culmination of years of strategic planning and advocacy. Working closely with volunteer advocates, LLS has held hundreds of meetings with members of Congress and sent them nearly 25,000 letters—just since 2020. We’ve funded several studies on the topic, created a video to explain the problem clearly, and launched social media and advertising campaigns targeted at lawmakers to ensure they know exactly what patients are facing.

Meanwhile, LLS has discussed the problem with top officials at the U.S. Department of Health and Human Services, White House advisors, and Congressional leaders, urging them to act.

“It’s hard to overstate the value to blood cancer patients of these landmark health care reforms,” said Brian Connell, LLS Executive Director of Federal Affairs. “Half of all blood cancer patients are diagnosed while covered by Medicare, and they finally have the security of knowing their treatment should never be out-of-reach.”

Experts project that reforming Medicare Part D will dramatically lower costs for more than 1 million patients each year.

Making healthcare more affordable for millions

In the early days of the Covid-19 pandemic, LLS and other patient organizations banded together to secure robust healthcare and patient protections during the unprecedented time.

One of those key steps was the expansion of a program called Advance Premium Tax Credits (APTCs) which reduced—and in some cases, eliminated—premiums for those buying health insurance through the HealthCare.gov market.

Last year, nearly 14 million Americans signed up for coverage using Healthcare.gov. That’s 21% more people than last year—and administrators said the increase was partly due to APTCs.

Since the spring of 2021, LLS volunteer advocates have sent their members of Congress nearly 19,000 letters urging extension of APTCs, which were originally set to expire at the end of 2022.

Thanks to the Inflation Reduction Act, APTCs will be available through the end of 2025, making healthcare—including cancer treatment—more accessible for millions of Americans.

Without the extension, more than 3 million adults would have lost insurance coverage, and 8.9 million more would have seen their premiums rise by several hundred dollars each month come January 2023.

“Cancer care is so expensive that it’s nearly impossible for patients to get treatment unless they have health insurance,” said Dr. Gwen Nichols, LLS Chief Medical Officer. “This support means millions more people will have access to quality, affordable cancer care if they need it.” 

What now?

Now that these reforms are signed into law, LLS staff and volunteer advocates will focus on educating patients about the new law and advising government agencies on how best to implement it.

LLS staff and volunteers will also work to close the Medicaid coverage gap. The coverage gap—which disproportionately impacts people of color—leaves more than 2 million people with low incomes without affordable healthcare in the 12 states that have chosen not to expand Medicaid to people with low incomes. We won’t stop until patients everywhere have access to quality, affordable treatment.

Want to help? Sign up to be an LLS advocate here, and we’ll let you know when and how you can send messages to your lawmakers about these issues.

Want to learn more about this topic? Read more in our press release, “Cancer Patients Cheer Senate Passage of Landmark Health Reforms.”