HURRICANE – A Hurricane mother is using her family’s struggle to pay for a “specialty drug” to bring awareness to a problem many Americans are facing, and bring attention to proposed legislation that could help with the problem.
Sarah Cloud, whose 17-year-old son, Chris, has been diagnosed with juvenile arthritis, struggles to come up with the money each month to pay for the medication Enbrel, despite having two full-time wage earners in the family, and having private insurance.
Chris needs the medication to both treat, and prevent permanent damage from, the disease enthesitis-related, or juvenile, arthritis.
As health care costs rise, many Americans are facing higher copays for medications that they need, and it has been especially hard for the Clouds.
“Nobody should ever have to feel like that, because you’re told ‘Here, we have something that your child can take,'” Cloud said. “You think all is great, and you go to get it filled at the pharmacy, and you can’t fill it,” Cloud said.
“And you’re left with the choice: Do we get groceries, or do we get medication? Do we pay a house payment, or do we get meds? Or do we just not take these meds, and hope that the damage is not permanent?” she said.
The medication Chris takes costs a little over $3,000 dollars a month, which the Clouds have to pay until their insurance deductible is filled. For the rest of the year, their copay for the drug is $612 per month.
“It’s huge for us,” she said.
The Arthritis Foundation, for which Cloud is an advocate, is supporting legislation introduced in the House of Representatives Wednesday that will “counteract an alarming trend in today’s health insurance market – moving vital medications into specialty tiers where patients share a high percentage of the costs,” according to the Arthritis Foundation website.
If passed, the Patients’ Access to Treatments Act, PATA of 2015, introduced by Reps. David B. McKinley, R-West Virginia, and Lois Capps, D-California, will limit cost-sharing requirements for medications placed in a specialty tier and make new and necessary medications more accessible by reducing excessive out-of-pocket expenses.
“It would limit the insurance companies from placing the new drugs or the specialty drugs in a category that charges us up to 50 percent,” Cloud said.
Cloud is realistic, and isn’t hoping for a $10 copay for medications such as the one her son needs, just for something more reasonable like $100, or $200.
“Some of the newer (IV) arthritis medications are $10,000, once or twice a month … $10,000 copays,” Cloud said. “And that doesn’t include the cost of the hospital or the IV therapy or the chemo lab to have it done.”
Last October, the Cloud family had to resort to a GoFundMe campaign to cover medication costs. Even with insurance, each August their deductible starts over, and they pay the full $3,ooo cost of the medication. Cloud said they simply couldn’t afford the medication.
“So for three months, he didn’t take all of his doses,” Cloud said. Not taking the full dose could cause complications and permanent damage to Chris’s joints and organs, which no parent wants to risk, “but at the same time we don’t have an option,” she said. “We had to make it stretch.”
The medication Chris takes is Enbrel, a ‘biologic’ used to treat auto-immune disorders like juvenile arthritis. Enbrel is a specialty drug, classified as a Tier 4 medication by insurance companies.
Specialty tiers require patients to pay a higher percentage of the cost of the drug, which can range from 25 percent to 50 percent or higher, resulting in hundreds – and even thousands – of dollars per month in out-of-pocket costs, according to the Arthritis Foundation.
The tier system classifies different medications in different categories of copay for the consumer – a Tier 1 medication is likely to be a generic, and have a very low copay. Tier 2 and Tier 3 medications come with higher copays, while Tier 4 includes brand new and ‘specialty’ medications, with much higher copays – sometimes in the thousands of dollars.
Some states, including Nevada, have help available for people with chronic illnesses, Cloud said.
“If we lived on the other side of the state line, they would pay … he would qualify for Medicaid, they would pay part of his copay, they would make sure that his services are covered, they help pay for partial costs of your hospitalization. You just have to have a qualifying chronic or terminal illness. Other states have that as well. Utah does not.”
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