If you are living with rheumatoid arthritis (RA) during the current COVID-19 pandemic, you’re likely to be feeling an enormous strain right now — wondering how you can get help to afford your treatments, and continue them safely. There are no easy answers, but with some research, patience, and the determination to be your own advocate, experts say you can improve your situation.
Prior to 2020, rheumatoid arthritis treatments were already expensive for many, even if their insurance covered the costs of pricey biologic drugs. For those in the Medicare Part D coverage gap or the uninsured, annual out-of-pocket costs ranged from severe to out-of-reach. For instance, annual out-of-pocket costs were $4,801 in 2019 for people on Medicare Part D who took biologics, including Cimzia (certolizumab), Enbrel (etanercept), Humira (adalimumab), and Simponi (golimumab), according to a study published in April 2020 in JAMA Network Open. The average retail price for a year’s worth of Humira, without insurance or discount coupons, can be as much as $111,000 per year, according to GoodRx; with Cimzia, Enbrel, and Simponi all being similarly priced.
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Now, with the COVID-19 pandemic, even more people with RA will struggle to get the treatments they need. A Kaiser Family Foundation (KFF) analysis estimates that nearly 27 million people and their families will lose job-based health insurance as a result of the crisis. While many will qualify for Affordable Care Act (ACA) coverage or Medicaid, more than five million will be left paying the full cost of their coverage, says the foundation.
The situation is especially burdensome — both physically and mentally — to people with chronic diseases who are facing interrupted treatments, says Scott Bruun, executive director of the Chronic Disease Coalition in Portland, Oregon. “The impact COVID-19 is having on the chronic disease community cannot be understated,” he says, with the added perspective of having rheumatoid arthritis himself. “Lapses in healthcare coverage, due to loss of employment, have left millions of patients without access to treatment and necessary mental health services.”
Clinical trials into the effectiveness of hydroxychloroquine (Plaquenil) to treat COVID-19, as well as a limited emergency use authorization by the U.S. Food and Drug Administration (FDA) to use it as a treatment, resulted in shortages of the drug for people with RA who depend on it to help slow progression of joint damage. “There are millions in the country who have RA and take that medication to live every day. It felt like they were being forgotten at the beginning of COVID-19,” says Jessica Nouhavandi, PharmD, a pharmacist who is co-CEO of the online pharmacy Honeybee Health in Culver City, California. Her business prioritizes hydroxychloroquine requests that are prescribed by doctors for RA and lupus, she says. Work with your healthcare provider on a plan for ensuring your supply isn’t interrupted.
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Even if your insurance coverage hasn’t been interrupted during the pandemic, a new federal rule may translate into higher out-of-pocket costs for brand-name drugs you are taking. Effective July 13, 2020, health insurers are allowed to not count drug manufacturer’s coupons and other cost-sharing assistance toward the annual deductible.
Steven Newmark, who is director of policy for the Global Healthy Living Foundation in Upper Nyack, New York, says that legislation is needed to ensure that all copayments, whether made by a patient or a third party, count toward the annual deductible. “When this protection is not in place, it means that individuals' annual deductibles are more difficult to meet, which essentially costs patients money. This is particularly true for chronically ill patients.”
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Given all that, here is what experts say you can do to if you are concerned about affording and maintaining access to your RA treatments:
As the KFF projected in its insurance loss analysis, most people who have lost their insurance in the pandemic will qualify for ACA insurance or Medicaid.
Twelve states have created special enrollment periods in their ACA insurance marketplaces during the pandemic, according to KFF. They include California, Colorado, Connecticut, District of Columbia, Maryland, Massachusetts, Minnesota, Nevada, New York, Rhode Island, Vermont, and Washington State. Go to your state’s insurance marketplace to apply. (A list is available at the Centers for Medicare and Medicaid Services website.) If your state wasn’t on the list, go to Healthcare.gov to see if you nonetheless qualify for special enrollment under a qualifying life event, or otherwise visit the site during the open annual enrollment period.
You can also explore applying for Medicaid at any point during the year. A tool at Heathcare.gov will help you to determine if your income qualifies for it.
When the time comes around for open enrollment, look at your insurance contract for how it treats copays. If you see something unfavorable, consider switching. “We’ve had concerns that insurance companies have hidden copay accumulator programs in the fine print when people re-sign their annual contracts,” says Newmark, referring to the practice of applying manufacturer’s coupons toward the deductible. “As a result, patients are caught by surprise that they haven’t met their deductible and their budget is impacted by unanticipated payments, which could be thousands of dollars spending on the structure of their health plan. Transparency and fairness is needed to protect patients from predatory payer policies.”
You may have some measure of protection against this practice if you live in one of four states that Newmark says passed bills last year to curb this practice: Arizona, Illinois, Virginia, and West Virginia.
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As CNBC reported in April, under the Coronavirus Aid, Relief, and Economic Security (CARES) Act, you can use your tax-advantaged health savings account (HSA) or flexible spending account (FSA) for over-the-counter (OTC) remedies such as nonsteroidal anti-inflammatory drugs (NSAID) pain relievers. If you rely on Advil or Motrin (ibuprofen), Aleve (naproxen sodium), aspirin, or a wide variety other OTC meds and feminine products, you can save money over the long run. The provision is retroactive to January 1, 2020. Check with your HSA or FSA administrator, or your pharmacy for more information on which products are now eligible.
You may qualify for free or low-cost medication through a drug manufacturer, if your income or insurance status qualifies you. Below is list of patient assistance programs for certain name-brand drugs to treat rheumatoid arthritis. Many will also have information about discount copay cards or coupons. As Jennifer Freeman, MD, a surgeon at Texas Regional Asthma and Allergy Center in Dallas, wrote on RheumatoidArthritis.org, your healthcare provider should be able to help you identify one for the medication you are taking, and navigate the application process.
The following foundations have been helpful to people with rheumatoid arthritis, with funding or advice. Because this is a time of great need, some funds may have waitlists.
This charity provides assistance with copays, deductibles, premiums, and out-of-pocket expenses, including a fund for people who have been laid off or furloughed during the pandemic.
The online community provides detailed information about copay assistance and financial assistance, listed by drug.
This resource provides an exhaustive database of information of financial assistance, listed by drug, as well as a drug discount card.
Good Days provides copay assistance for people with chronic diseases.
This organization helps underinsured people with out-of-pocket expenses. The rheumatoid arthritis fund currently has a wait list, but sign up and keep checking back.
AARDA provides a listing of financial assistance programs and information.
Some companies provide drug discount cards, compare discounts, or provide drugs directly to the consumer for savings. Among them are:
If you have run out of options for affording your medication, go back to your healthcare provider and see if there are less expensive options for treatment, such as generic drugs or alternate ones that cost less. “If a patient presented to me at my pharmacy, and they were on something like Enbrel or Cosentyx, and they couldn’t afford it anymore, get a manufacturer’s coupon or anything like that, I would say, ‘Look, you’ve got to get with your doctor and evaluate and see if there’s another option,' ” says Dr. Nouhavandi.
Be persistent in exploring all of these options and enlist the support of your healthcare provider while doing so. Your No. 1 thing, Newman says: “If you are on a medication that is working, you should self-advocate and make sure that you can continue use that medication.”