Navigating the US health insurance system is topic of panel discussion

Resources for MG are available, but patients have to seek them out, speakers said

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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For people with rare health conditions like myasthenia gravis (MG), navigating the U.S. health insurance system can be difficult, but there are many resources that can support patients.

Challenges with accessing healthcare and advice about overcoming them were the main topics of the “Navigating Insurance Coveragepanel discussion at the MG Foundation of America (MGFA) National Patient Conference, March 26-28, in New Orleans.

A complex system riddled with stumbling blocks

The U.S. health insurance system is complicated. About half of Americans are insured through their employers. Another third or so are insured through government programs; Medicare provides insurance for the elderly and Medicaid is for people with limited income and resources. Nearly one in 10 Americans are uninsured.

“Coverage varies in the United States. We have a mixed system,” Jason Gidelson, vice president of U.S. value and access at Alexion, said during the discussion. “Even if you’re on Medicaid, it can vary significantly by state. Within a state there can be many different Medicaid plans.”

In the last year or so, there has been an increase in using alternative funding vendors (AFVs), companies that will “carve out” specialty care from an employer’s typical insurance and connect patients who need it to foundations or other forms of support, Gidelson said.

“I think that’s incredibly problematic. I think that relying on a foundation to provide your medicine, rather than your insurer, your employer, puts you at a significant risk,” Gidelson said, adding about 8% of employers use AFVs, but more are considering it. “So I would encourage you to be on the lookout for this. … This is something that I see as even more onerous and dangerous than even some of the challenges navigating the insurance process.”

What does it mean to be in a situation where you’re getting progressively worse? I see this as a situation where one size doesn’t fit all and what may be a little less problematic nationally can be a very severe issue for people living with a rare disease.

Even for those with insurance, getting coverage for necessary care can be difficult. Gidelson said, in his experience, the biggest barrier is formulary exclusion.

“This is where a insurance company just won’t pay for a medicine. It’s excluded from formulary without going through a real significant medical exception process,” he said. “These aren’t just … traditional medicines where there’s many options. There are oncology medicines that are on formulary exclusion lists. There are rare disease medicines that are on formulary exclusion lists. Not all of them have a comparable therapeutic option.”

Insurers also sometimes require so-called step therapy.

“This is the idea that you need to try certain medicines before moving on to the medicine that you and your physician believe are most appropriate,” Gidelson said.

For conditions like high blood pressure or cholesterol levels that don’t have a major effect on day-to-day life, this might not be catastrophic, but, “what does it mean to try and fail a medicine when you have myasthenia gravis? What does it mean to be in a situation where you’re getting progressively worse?” Gidelson said. “I see this as a situation where one size doesn’t fit all and what may be a little less problematic nationally can be a very severe issue for people living with a rare disease.”

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Self-advocacy can help with prior authorizations

Even when an insurer covers a medication, they generally require prior authorization for treatments for MG and other rare disorders.

A prior authorization is where the insurance provider must approve a therapy before a patient can access it. The aim of this is to make sure medicines are being prescribed for an appropriate patient and by a provider with appropriate expertise, according to Joey Robinson, field reimbursement manager at Alexion. Insurers also might weigh financial considerations, such as where the therapy may be administered.

When it comes to reauthorization, insurers typically will only allow continued access to a treatment if there’s data showing the patient responded to it, Robinson said.

If patients are denied a prior authorization for a needed therapy, the most important thing they can do is advocate for themselves, he said. “The patient advocacy role is so important in getting an approval and I don’t think patients often realize this; the ability you have to call your insurance payer directly with your information, with your health records, and say, ‘hey, I meet this criteria,’” Robinson said. “It’s just important for your to reach out.”

Self-advocacy doesn’t mean a patient has to do it all by himself. Seeking support from from advocacy organizations, pharmacy companies, healthcare providers, and hospital staff can be helpful, he said.

While health insurance can help cover medical costs, patients in the U.S. typically accumulate substantial out-of-pocket costs that insurance doesn’t cover.

“You pay a premium, you have a deductible, you have a copay or co-insurance for your medication … Point being that, regardless of your insurance, you share [a] significant portion of your out-of-pocket costs. And those costs are increasing; I know I don’t need to tell you that,” Gidelson said.

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Resources to help cover costs

Michelle Vogel, a patient advocate and vice president of Patient Advocacy at the specialty infusion pharmacy IV Solutions RX, said many MG medication manufacturers offer programs to help patients cover treatment costs.

Alexion offers the support program OneSource for its approved MG therapies Soliris (eculizumab) and Ultomiris (ravulizumab-cwvz). Argenx offers the My Vyvgart Path program for its approved MG therapy Vyvgart (efgartigimod).

Manufacturers of several brands of intravenous immunoglobulin (IVIg) therapies — Bivigam, Gammaplex, Octagam, Panzyga, and Cutaquiq — also offer financial support to MG patients, Vogel said.

“Enrolling in manufacturer programs can help you navigate the complex healthcare system,” she said.

Cost coverage assistance programs have traditionally been applied toward a patient’s deductibles, but this may be changing, Robinson said.

“We’ve seen in recent years, plans have begun implementing strategies that mitigate that … you can utilize the copay [assistance] program, but it doesn’t count towards the deductible itself.”

Enrolling in manufacturer programs can help you navigate the complex healthcare system.

Support also may be available from organizations like The Assistance Fund, which offers financial support to help cover the cost of FDA-approved therapies for U.S. citizens who meet certain financial eligibility requirements based on household income and size. Another program called Conquer MG provides up to $1,000 a year to help cover medical expenses for MG patients in Illinois, Indiana, or Wisconsin.

For patients who have health insurance, the National Organization for Rare Disorders (NORD) offers assistance to help cover premiums, deductibles, labs, diagnostics, and more.

“Their list is really extensive,” Vogel said. To be eligible for NORD assistance, a patient must be a U.S. citizen or resident and must be at or below 400% of the poverty level, although, “if you’re above that but you have debt, they’ll apply that to bring your level down,” Vogel said.

NORD also offers financial assistance to uninsured patients.

“If you don’t have insurance, they actually have a program that will help you with medical appointments … They won’t cover the drugs in that program, but they’ll help you with a lot of other things, so that’s really someplace to go,” Vogel said.

For patients on Medicare at or below 400% of the poverty level (including certain medical debts), more than $9,000 a year in assistance, as well as added funding for transportation, may be available through the PAN Foundation.

A Medicare program called Extra Help can offer assistance for patients with a yearly income at or below $16,660, if single, or $33,240, if married. Those with incomes a bit higher than these cutoffs also may be considered.

Extra Help is “a really great [program] that I don’t think people look at to apply for,” Vogel said, adding it will “cover most of the cost for the drugs, so it’s worth looking at and applying.”