How to protect patient access to Medicaid

“We have 87 million patients in America who rely on Medicaid for either supplemental or primary coverage,” began Virginia McMillin of Jazz Pharmaceuticals during the Biotechnology Innovation Organization (BIO) Patient and Health Advocacy Summit on October 23.

“That’s nearly 1 in 4 Americans,” she said during the session, Focus on Medicaid: Protecting Patient Access

“Half of all children with asthma are enrolled in Medicaid or [Children’s Health Insurance Program],” added Erika Sward of the American Lung Association. “And it is very critical to managing both chronic lung disease, as well as diagnosing and having treatment for lung cancer.”

Indeed, Medicaid is one of America’s largest government programs, spanning federal and state jurisdictions. And while Medicaid has allowed so many Americans access to healthcare that they might not have otherwise been afforded, there are issues and threats to the program that undermine the needs of patients.

“Right now, there’s an issue called ‘unwinding,’ which is an end of COVID coverage policy that is seeing a lot of patients taken off on the Medicaid program—and it’s not a process that is going smoothly,” explained McMillin. “We’ve also got proposed changes coming from the Medicaid drug rebate program from a proposed rule from [Centers for Medicare and Medicaid Services] that could inadvertently make some significant changes to help patients access care. And we also are facing other national trends like utilization management that are really changing how patients can access the care.”

An inflection point for Medicaid

The U.S. is finding itself at an inflection point when it comes to Medicaid in the post-COVID pandemic era, and that is affecting different patient population groups in various ways.

“Lung disease discriminates,” said Sward. “There are a lot of folks that have a lot of chronic conditions that have not been diagnosed, or who should have been screened for cancer, or that can’t afford meds and are not going to emergency departments when they need to.”

“We have concerns about the current state of Medicaid,” she continued, “particularly when it comes to the unwinding we’re seeing. We are also concerned with some of the efforts that we’ve seen at the state level with, for example, Georgia successfully adding work requirements as part of a kind of faux expansion. We are also concerned with some of the different limitations that we’ve seen coming out of states trying to scale back coverage.”

“Everyone in this room should care about Medicaid coverage, because not only is there a huge chunk of individuals for whom Medicaid is where they get their health care, but also because Medicaid access, or lack thereof, really determines some of the most expensive coverage that we as a nation have to manage,” continued Sward.” The better coverage Medicaid patients have, and the better their conditions are managed, or prevented, and the better off we all are.”

Medicaid and cancer

When it comes to cancer, Medicaid is unequivocally saving lives. Yet the banality of faulty paperwork puts patients at stark risk.

“The one thing we know that cancer patients need to survive their cancer is health insurance,” said Pam Traxel of the American Cancer Society Cancer Action Network. “There are about 2 million people with cancer who currently have Medicaid as their insurance, including one-third of kids who are currently battling cancer and use Medicaid as their primary insurance.”

Medicaid often helps patients whose work-related insurance dropped them as a result of their condition. And for low-income states, cancer care cannot happen for patients without Medicaid—a reality that is disturbing when considering the states that are looking to limit Medicaid coverage in their state.

A paperwork problem

“We were at 92% health insurance coverage during COVID, which was a huge accomplishment for us as a country, but now we see those numbers winding backwards and going down,” said Traxel. “What this means is that we have a lot of people who are in active treatment right now, whether it’s cancer or a rare disease, or going to a doctor that they worked really hard to find (because not so many physicians take Medicaid), and they’re being told, Hey, there’s a problem with your health insurance…. Because of a paperwork snafu, people are losing coverage.” 

The paperwork issue becomes all the more stark because the vast majority of people who are kicked off Medicaid are done so because of a clerical error and not for legitimate reasons. 

“Medicaid is really complicated,” continued Traxel. “But what should not be complicated is we should not be kicking people off of their health insurance due to paperwork mistakes. And what we know is that roughly 72% of the people and the children who are being kicked off this program are essentially being kicked off due to some administrative error. For example, they don’t have an active address or an email address, or they forgot to sign up for something. And this is a really big challenge I think that we as a community have to think about.”

“We’ve seen upwards of 2 million kids get kicked off of Medicaid simply because of, frankly, sloppiness, and this happened in more than 30 states,” echoed Sward. “And what we’re really thankful for is that the administration caught this and told states that they have to pause this process to resolve it.”

This issue is also not a uniform issue and is much more pronounced in states that have more hostility towards the program (for example Texas, which sees 66% of enrollees in Medicaid kicked off), compared to more Medicaid-friendly states (like Illinois, which only saw 11%). 

The complexities of Medicaid and rare disease

Medicaid issues become even more complex for rare diseases, as many rare disease treatments don’t necessarily fit in the traditional model of care.

“The rare disease community represents an estimated 10,000 rare diseases, which reflects about 30 million Americans,” said Annie Kennedy of EveryLife Foundation for Rare Diseases. “We are highly Medicaid-eligible communities. It’s estimated about 50% of individuals living with rare diseases are Medicaid eligible.”

“In 2019, we found that the economic impact of living with a rare disease in the United States was close to a trillion dollars. Close to 60% of those costs were coming out-of-pocket for families and society,” said Kennedy. And “40% of those costs were direct costs, which means that those costs being shouldered by families are not being reimbursed.” 

And while Medicaid has proven to be one of the most comprehensive forms of healthcare coverage for rare disease patients, barriers are still putting patients at risk. The average diagnostic odyssey is six years, explained Kennedy, and can include 17 medical interventions. And, unsurprisingly, specialists for rare diseases are not present in every state, meaning access to diagnosis and treatment for patients under Medicaid, which is limited by state, becomes a problem. 

The growth in access to telehealth during COVID-19 allowed some of these barriers to be removed, continued Kennedy. “People with rare diseases could actually access the expert provider that they had never been able to see before.” But telehealth is not a silver bullet, and a number of telehealth bills are lingering on Capitol Hill. 

Are any states expanding Medicaid?

“On the bright side, we are seeing some positive changes with expansion of Medicaid in some states,” added McMillin. 

“North Carolina expanded Medicaid through an effort earlier this fall,” said Sward, “and starting December 1, 600,000 North Carolinians will be able to sign up for health care.”

Expansion of Medicaid in southern states signals hope for patient advocates. Perhaps a tide is turning, one state at a time.

“Medicaid is not a lesser plan,” asserted Kennedy. “Medicaid, for some communities, can be more comprehensive coverage, especially in rare diseases. Medicaid provides reimbursement oftentimes for paid caregiving services.”

Medicaid expansion in lower-income states is key to Americans being healthier and having a better quality of life in the long run. When advocates, legislators, and civil servants are able to work together to improve, expand, and possibly even perfect the system, the better patients will live. 

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