The Affordable Care Act’s out-of-pocket cap has been delayed until 2015, which may disproportionately affect multiple sclerosis patients.

An article published in earlier this month in The New York Times revealed a significant setback for the Affordable Care Act, better know an Obamacare. The law’s yearly out-of-pocket spending cap of $6,350 per person has been delayed until 2015. Hidden in governmental legalese, this change has been outlined on the Department of Labor’s website since February of this year.

The cap on out-of-pocket spending, including deductibles and co-payments, was designed to protect consumers and constitutes a large part of what could make the Affordable Care Act, well, affordable.

According to the Times, insurers are saying their computer systems are not set up to track a patient’s total out-of-pocket expenses from multiple doctors. They say that the industry needs extra time to bring their systems up to speed.

For people with multiple sclerosis (MS) who must often pay high co-payments for health services and prescription drugs, this news comes as a crushing blow.

According to a National Multiple Sclerosis Society (NMSS) fact sheet given to Healthline regarding the cost of the disease, a 2009 study of medical bankruptcy found that “illnesses such as multiple sclerosis were associated with the highest out-of-pocket expenditures.”

And those with chronic, degenerative diseases like MS may face multiple spending caps when they do go into effect in 2015.

“Because people with MS often have a broad range of healthcare needs,” explains Cyndi Zagieboylo, President and CEO of the NMSS, “the potential impact rises exponentially for people with MS in the event they are with a plan that has multiple administrators. Taken to the extreme, this ruling by the Administration could result in multiple out-of-pocket limits.”

MS patients tend to have dedicate care providers to address MS-specific issues, along with primary care providers, who oversee their general health. These specialists often include neurologists, ophthalmologists, and physical therapists. Each of these might lead to a separate out-of-pocket limit, depending on how the patient’s health insurance company does the math.

The way the ACA is worded, there is room for a broader interpretation that lends itself to unfair—albeit legal—enforcement of multiple out-of-pocket limits on a single patient.

“People that are with a plan that chooses to utilize multiple out-of-pocket limits are really getting a raw deal based on the Administration’s decision,” said Zagieboylo. “Managing the costs of a chronic illness such as MS is already extremely difficult, and the promise of out-of-pocket limits was one of the reasons groups like ours supported the health reform law, so we are extremely concerned about the impact this temporary provision could have in the coming year. It’s important for all of us to speak up and let the Administration and Congress know that we don’t want the intent of the Affordable Care Act to be subverted.”

The impact on patients’ wallets will be most acute when they fill prescriptions for one of the many disease modifying therapies (DMTs) on the market used to reduce relapses, slow disease progression, and provide better quality of life.

According to Zagieboylo, “We are very concerned about the possibility of multiple out-of-pocket limits. In addition to some plans having separate benefit administrators for medical and pharmaceutical needs, an unknown number may also have separate administrators for mental health and other specialty areas.”

“In fact”, Zagieboylo added, “studies have suggested that clinical depression, the severest form of depression, is more frequent among people with MS than it is in the general population or in persons with other chronic, disabling conditions.” This could result in yet another out-of-pocket limit for a person with MS, if they need treatment from mental health specialists and that service is provided by a separate healthcare administrator.

Using only the DMTs as an example, and referring to Healthline’s previous series on MS drug prices, Zagieboylo points out that someone with a 25 percent cost share on $4,800—the average monthly cost for the least expensive therapies—would need to pay $1,200 per month. “Therefore, they’d reach the protection of the proposed $6,350 cap after about five months. The most expensive therapy listed is Copaxone at $6,000 per month. Again, with a 25 percent cost-share, the patient co-pay is $1,500 so they’d reach the protective cap after four months,” she said.

With this delay in the out-of-pocket cap, some people with MS may have to forgo DMTs, with a direct effect on their quality of life.

According to another NMSS fact sheet, “Although the vast majority of people with MS have some form of health insurance, 70 percent reported at least some difficulty paying for health care and 16.4 percent reported a lot of difficulty. Twenty-one percent reported that they had spent less on food, heat, and other necessities in order to meet health care expenses.”

The NMSS has taken a stance on the issue, according to Zagieboylo. “Given that the Administration has chosen not to prevent the possibility of multiple out-of-pocket limits, its incumbent on organizations like ours to get the word out,” she said.

In an effort to appeal to the compassionate sides of those in a position to do so, “We also urge all health plans throughout the country to limit out-of-pocket caps per the Affordable Care Act’s intended ceilings, starting in 2014. Multiple caps goes against the spirit of the new law, and more importantly, goes against the needs of those turning to the ACA for their health insurance coverage.”

“If most people get hit with multiple unexpected out-of-pocket limits, they won’t have the financial resources to pay for the healthcare they need, then what options do they have?” Zagieboylo added.

“Though the National MS Society does provide financial assistance to help people with MS in emergency situations and offer scholarships to support higher education for people with MS and their families, we do not offer direct financial assistance for an individual’s medications.”

The NMSS’s MS Navigators will instead help to connect individuals with programs that will help them access medications at affordable costs. Contact the NMSS to find out how you can aid efforts to make changes in the law, or find assistance to help with your out-of-pocket expenses.