Kansas seniors like me have to choose: my medication or my mortgage? There is a fix

On a fixed budget, it’s impossible for me to pay the $3,000 monthly out-of-pocket cost for my multiple sclerosis medicine. Some months, I’m lucky enough to have financial assistance from health care nonprofits. But when I don’t, I’m forced to go without it. It’s a choice that almost cost me my eyesight — and it’s a choice I shouldn’t have to make.

Each month, I face a dilemma: Does my need for medication outweigh my need to pay this bill or to pay my mortgage? Do I drain my 401(k) until it runs out to cover my prescriptions? I know the dangerous outcome of skipping my medication, but when you’re put in an impossible situation, no option is good.

I’ve come to learn that millions of Americans on Medicare share my experience and report spending more than $6,000 on out-of-pocket prescription costs every month. Since Medicare is barred from negotiating drug prices with manufacturers, seniors and people with disabilities must pay whatever price is set by the pharmaceutical industry. As a result, Americans pay almost three times more than citizens of other developed countries for the same drugs.

When I was diagnosed with multiple sclerosis in the 1990s, I was working and had access to excellent health insurance. The thought of forgoing treatment never crossed my mind. MS impacts the nervous system with lesions growing on the spine and brain, resulting in the inability to walk or use your arms. So when my MS symptoms progressed, I found myself unable to work. In 2008, at the age of 52, I applied for Social Security Disability Insurance.

For the next eight years, I was stuck in limbo, waiting for disability approval and physically unable to work. Without insurance, I couldn’t afford my medication. So I had no choice but to go without it and pray I would be OK.

I realized prayers weren’t enough in 2015, when I had one of the worst relapses of my life. My left leg went numb. My condition would have deteriorated if I didn’t receive a $2,000 steroid infusion each day for five days straight. Miraculously, my father had enough saved to dip into his retirement fund and help me foot the $10,000 treatment that saved my health.

Eight years after first applying for disability, my claim was approved and I enrolled in Medicare. I had eagerly anticipated the day I’d qualify for Medicare, believing I’d finally be able to afford my prescriptions. But to my surprise, the out-of-pocket cost of my medication was $3,000 a month. The price left me with few options: Skip my medication, seek donations or sacrifice my entire net worth to purchase the prescription.

These should not be the only options in the American health care system. But President Joe Biden does have a solution that more than 80% of Americans agree with: Allow Medicare to negotiate drug costs and cap out-of-pocket spending on prescriptions at $2,000 a year. This would change my life. I wouldn’t have to choose between my mortgage or my medication.

Sometimes I have the money for my copay, and when I don’t, I can’t take my medication. Without consistent treatment because of the cost, I had another relapse in 2019. That time, it almost cost me my vision. I needed the pricey steroid infusion to save my eyesight. Fortunately, Medicare covered most of it. But that expensive treatment could have been avoided entirely if my prescription costs weren’t so high.

Living with a chronic, progressive illness is difficult. When you add the stress of wondering how you will pay for treatment, it makes getting through each day that much harder. I am fortunate that skipping my medication hasn’t taken my life yet, but many Americans are not as lucky. I urge Congress to support Biden’s plan to lower drug costs. When there are lives on the line, we can’t waste time.