He needed his medication for multiple sclerosis. He got more paperwork instead.

Boston Globe

13-05-2025

In 2022, Blum's neurologist recommended he switch his primary MS medication to Kesimpta, which he takes by monthly self-injection. At the time, Blum was on medication that was administered by infusion twice a year in his doctor's office and fully covered by Medicare. Kesimpta, by contrast, would cost many thousands of dollars a year, way too expensive for Blum. (The switch was recommended mainly as a matter of convenience.)
That's when Blum discovered he was income-qualified for a no-cost supply of Kesimpta from the
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NPAF said Blum would get his medication at no cost so long as there was no significant change in his finances, Blum said.
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It was a godsend. For the next two and a half years, everything went smoothly. Blum would call NPAF to order his medication and it would arrive at his house in time for his monthly doses.
This is what Blum says happened next:
In January, when he tried to call in his order as usual, NPAF told him he had to reapply for enrollment. It annoyed him that he had received no advance warning of this new requirement, and it came only a couple of days before his next scheduled dose.
But he did as instructed by getting a note from his doctor, filling out a form, and returning both to NPAF, along with a copy of his 2023 tax return, all within 48 hours. (Patient assistance programs overall are tightening rules in response to scrutiny from regulators and the high cost of the programs.)
NPAF also required him to obtain documentation that he was not eligible for drug assistance from an alternative program — the Social Security Administration's
Nevertheless, he applied online for Extra Help to satisfy NPAF's requirements. The denial letter, however, would take up to 30 days to arrive in the mail, according to the SSA website.
Under these circumstances, NPAF provided Blum with his medication even without the denial letter, as a 'courtesy.'
A month later, when he tried to refill his medication, NPAF said it hadn't received the Extra Help denial letter. Blum said he was still waiting for it. NPAF agreed to a second 'courtesy' dose of his medication.
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A short time later, the Extra Help letter finally came and Blum forwarded it to NPAF.
But in March, NPAF again denied Blum his medication. It said the Extra Help denial letter it received from Blum wasn't what it needed, though it didn't explain why.
Blum told NPAF that the SSA website contained a statement about eligibility that clearly excluded him. At NPAF's suggestion, he provided screenshots of the eligibility section of the online application for Extra Help.
That apparently was good enough for NPAF. Blum got his medication for March.
A month later, when Blum sought a refill, NPAF insisted on a formal denial letter, not screenshots. And this time, NPAF said it would not give him a courtesy refill, leaving Blum confused and demoralized.
In an email requesting my help, Blum said NPAF's rejection of the screenshots 'contradicted their previous directive' and came only days before he was supposed to take his next dose.
Blum said NPAF should have reached out to him as soon as it determined the screenshots were unacceptable, but instead it waited until he attempted to make a new order.
'Now they are refusing any further help,' he wrote to me.
The only way for Blum to receive his medication was to obtain an Extra Help denial letter. But he knew the process for applying, waiting for the letter, then forwarding it to NPAF would be time-consuming (if the letter was accepted at all), likely forcing him to miss at least one monthly dose and maybe more.
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Blum also worried that recent staff cuts at Social Security could add new delays to getting his requested documentation.
Blum said he didn't expect an immediate deterioration in his health due to one or two missed doses, but it certainly wouldn't help.
The resolution
: I wrote to NPAF: 'It seems to me Mr. Blum has done everything in his power to comply with NPAF's requirements, but the requirements' seem to have constantly changed.
'Mr. Blum needs his medication,' I wrote.
NPAF reacted quickly by promptly delivering Blum his medication and assuring him he would continue to get it at least until it's time to reapply for enrollment next year. Blum said he was relieved and grateful, though he's a bit wary of what might unfold next year.
The takeaway
: NPAF, in a statement to me, declined to comment specifically on Blum. But it did say that NPAF patients were informed of the new enrollment process and requirements in 'multiple letters sent out in October-December 2024.'
Blum said he received no such letters. Could he have missed them in the mail? 'Highly unlikely,' he said. 'I'm extremely attentive to anything having to do with my health and medication.'
In any case, the requirements kept changing. And life is tough enough without these added headaches. What can a consumer learn from Blum's unfortunate experience? Beware that something can always go wrong when it comes to medications and paperwork. Even when things are going smoothly, ask questions and seek assurances, preferably in writing. Anticipate problems, be proactive, document everything — and be persistent.
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