Americans with disabilities need support, solidarity from legislators

Last weekend, I was at my local pharmacy buying birthday cards when I remembered that I needed to pick up the insulin refill my endocrinologist had ordered the day before. After giving the cashier my name and date of birth, I paid $3 for my monthly insulin pack, which I take for my cystic fibrosis-related diabetes.

The insulin price left me incredulous. It was only two and a half years ago that I was paying about $60 for the same prescription. But thanks to the Inflation Reduction Act of 2022, the cost of insulin has been capped at $35 a month. Many diabetics no longer need to ration insulin in order to survive and afford their next refill.

Every other month, I take Cayston (aztreonam for inhalation solution), which helps fight the Pseudomonas bacteria that grow in many people with cystic fibrosis (CF). To take Cayston, I have to mix a liquid with a small bottle of powder and pour it into a nebulizer three times a day. Because of insurance, I pay only $15 for a 28-day supply. If I didn’t have insurance, I could pay around $12,000 for the same amount of medicine.

If you’ve been reading my column since the early days, you’ll likely know that I’ve asked pharmaceutical companies to bear in mind the expensive cost of living with a rare disease like CF. I’ve also made the point that disabled people can be effective leaders. We understand personally how effective or ineffective certain policies can be.

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Disabled people need support from legislators

It’s a presidential election year in the United States, and people with disabilities are seeking unity and solidarity from all of our elected officials.

In the past, presidents from both major parties have made efforts to reform healthcare. In 1990, President George H.W. Bush signed into law the Americans with Disabilities Act, prohibiting discrimination against people with disabilities. Twenty years later, President Barack Obama proposed and passed the Affordable Care Act to improve access to affordable health insurance.

However, more reform is needed to ensure equal rights and benefits for disabled Americans. For example, many people with disabilities still face marriage inequality. According to the Disability Rights Education and Defense Fund, as of last December, those receiving Supplemental Security Income (SSI) could face penalties if they get married. While those receiving Social Security Disability Insurance (SSDI) don’t face marriage penalties, they are required to have a work history.

Another startling example is that many disabled Americans still live below the poverty line. According to the Center for American Progress, 2022 data from the U.S. Census Bureau showed that 24% of Americans with disabilities, ages 18-64, lived below the poverty line.

When we, the disabled community, ask for a semblance of solidarity, what we want is the ability to live a dignified life without going into poverty or being discriminated against because of what we can or cannot do.

One legislative change I encourage our elected officials to make is to allow people on SSI to continue receiving the same monthly benefits if they get married. As middle-class man who’s married, I know that balancing a household budget can be hard for anyone, but with a disability or illness we typically have to pay for an additional category — medicine and medical equipment. In my case, doing that would be much harder if I were unable to work. Many of us with disabilities already feel like a burden, and certain laws can exacerbate this feeling.

Poverty shouldn’t exist in one of the most prosperous nations in the world, yet it’s the reality for much of our society’s vulnerable population.

Regardless of whom you support in the upcoming elections, we all need to work together to ensure that disabled Americans can live with dignity and respect.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.