The high cost of multiple sclerosis treatments has forced 40% of patients to take drastic actions and alter their use of the medicines, such as cutting back or skipping dosages altogether. And many report the financial burden is not only hurting their lifestyle, but impairing their ability to save for retirement or college for their children, a new survey found.

For instance, 14% reported they switched to a generic, despite being satisfied with their existing treatment; 12% stopped using their medication for a period of time; 9% skipped or delayed filling a prescription; and 8% took less of their medicine than prescribed, according to the survey by the National Multiple Sclerosis Society.

Meanwhile, the out-of-pocket costs associated with the medicines meant that 25% of the nearly 600 patients who responded to the survey spent less on themselves. In addition, 16% saved less for retirement or college, 11% spent less on groceries, 9% postponed paying other bills, 4% postponed retirement, and 2% took a second job.

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The survey findings continue to tell the real story of what its like for people with MS to get the treatment that they need, said Bari Talente, executive vice president of advocacy for the National Multiple Sclerosis Society, which canvassed patients last summer. It is these experiences and perspectives that should lead every conversation happening about drug pricing and access.

The results emerge amid a wider national debate over the cost of medicines in general. Drug pricing has become a key pocketbook issue for many Americans, prompting the Trump administration to devise several plans, none of which have gained traction, and Congress to propose numerous bills. But whether legislation will proceed remains unclear.

The cost of multiple sclerosis medicines, however, has been one of the flashpoints, as studies have demonstrated that patients and taxpayers face rising costs.

Last year,astudyin Neurology found that multiple sclerosis patients paid $15 a month average out-of-pocket costs in 2004, but that jumped to an average of $309 a month by 2016, a 20-fold increase over a 12-year period. Patients with high-deductible plans paid an average of $661 per month compared to $246 a month for those not in a high-deductible plan two years ago.

A recentlystudy in JAMA Neurology found that over a recent 10-year period, rising prices for multiple sclerosis drugs caused Medicare spending for the medicines to rise more than 10 times, and Part D beneficiaries saw out-of-pocket costs increase more than sevenfold. Spending per 1,000 beneficiaries by the health program jumped from nearly $7,800 in 2006 to more than $79,400 in 2016.

Meanwhile, the wholesale, or list, prices for a dozen drugs new and old continued to risebetween 2014 and 2019, according to academics at Oregon Health and Science University, whoseearlier researchfound prices for older medicines kept rising even as newer treatments were launched. The prices for the medicines ranged from approximately $76,000 to nearly $99,000.

Drug pricing mechanisms and economics that have attracted so much negative attention in recent years remain very much intact

Christopher Raymond, PiperJaffray analyst

For instance, Gilenya, a Novartis (NVS) drug, rose from $63,444 to $99,896, while the cost of Avonex, which is sold by Biogen (BIIB), increased from $59,085 to $$90,035. Tecfidera, another Biogen drug, climbed from $59,957 to $94,991. List prices do not reflect any rebates a drug maker may pay for favorable placement on formularies, the list of medicines covered by health plans.

Price hikes have not gone unnoticed on Wall Street, either.

Earlier this month, PiperJaffray analyst Christopher Raymond expressed surprise that Biogen boosted prices as it did. As an example, he cited the Tysabri, which rose 3.5% and experienced price hikes in January 2019 and again in July 2019 by the same amount. Similarly, the list price for Tecfidera rose 6%, mirroring the price hike early last year.

We think this is somewhat remarkable, given how much scrutiny has been assigned to pharmaceutical drug pricing both in terms of tactics and industry structure over the last several years, he wrote in an investor note. But the broader point here is that drug pricing mechanisms and economics that have attracted so much negative attention in recent years remain very much intact.

A spokesman for the BIO trade group wrote us that patients should never have to go without the medicines they need because of what they are forced to pay out of their own pockets. As the results of this survey show, people face difficult choices when insurance companies discriminate against those who rely on prescription medicines and restrict patients access to the therapies their doctors prescribe. This is exactly why we need a holistic solution, because its the only way to ensure all patients have access to the medicines they need with out-of-pocket costs they can afford.

More than once, pricing has prompted the National Multiple Sclerosis Society to take companies to task.

Last fall, the organization criticized Biogen for boasting that a newly approved pill would have the lowest annual wholesale price of any such medicine, although the difference amounted to $500 less than another new treatment from Novartis. The move was designed to appease criticism, but the organization accused the company of being disingenuous.

A Biogen spokeswoman wrote us to say the company will continue to work closely with PBMs and payers to help minimize the impact of out-of-pocket costs to patients. Our approach is to consider modest price adjustments only for products we continue to substantially invest in (new research and increasing clinical evidence base) and limit adjustments for other products to minimum levels, in-line with inflation.

And over the past year, the patient group also chided Novartis for pricing its new Mayzent pill at $88,500 and EMD Serono for charging $99,500 for its new Mavenclad tablet. Such public statements are unusual from patient groups that accept industry funding. Drug makers provide about 4% of total revenue to the organization, and Biogen is the largest donor, contributing more than $1.3 million in 2018.

A paper in Neurology last November detailed how four unnamed executives acknowledged that pricing for multiple sclerosis drugs is based on competition, insurance rebates, and the ability to set U.S. prices higher than in other countries, rather than a long-standing industry argument about the high cost of research and development.

MS has seen remarkable treatment innovations in the last 25 years, but that progress doesnt mean much ifpeople with MS cant access these innovations due to price considerations, nor should they experience the enormous challenges and choices we heard about in our survey, said Tim Coetzee, chief advocacy, services and research officer, at the National Multiple Sclerosis Society.

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High cost of MS medicines forcing patients to take 'drastic actions' - STAT