When a chronic illness is political — it can kill

As a 51-year-old man with Parkinson’s disease, I think a lot about medications. A couple of months ago, I began taking a new one called a dopamine agonist, which sells under the brand name Neupro. 

We are taking it slowly, but I think I’m in love.                                     

Agonists work by mimicking dopamine, a neurotransmitter that affects movement and mood. Those with Parkinson’s lose the ability to produce dopamine, so agonists trick the brain into thinking it has more than it has. When taking Neupro, I move better, enjoy greater dexterity and have more energy. With respect to how I feel, this drug has turned back the clock several years. 

What’s not to love? A couple of things.

First, needing more medicine reminds me that Parkinson’s gets worse over time and that the best we can hope for is that the disease does not outrun the medicines that treat it.   

Second, medicines cost a lot. When I picked up the Neupro at my local Walgreens and the pharmacy tech rang it up, he said, “You saved $665.” A month’s supply of Neupro costs over $700, on average. Including the cost of Azilect, the other Parkinson’s drug I take, Parkinson’s costs me more than $1,500 a month. Or it would if I did not have health insurance.  

Unfortunately, many people with Parkinson’s or other chronic diseases have no health insurance, usually because they can no longer work and afford the premiums. Typically, they have not received approval for Social Security disability insurance (SSDI). 

Initial applications may take six months or longer to consider, and only 36 percent  receive initial approval. Those denied enter a series of lengthy appeal processes. 

Currently, 63 percent ultimately receive benefits, but the process may take two or three years, and, crucially, Medicare benefits start 24 months after SSDI begins. Until then, one who cannot work must nevertheless pay out of pocket for medicines and other health care needs.

In fact, illness often leads to financial hardships. In the United States, an estimated 530,000 families file for bankruptcy annually, and67 percent cite illness and the cost of care as primary reasons. Currently, 28 million Americans risk financial catastrophe because they have no health insurance.

 That is why living with a chronic illness is political — because it affects so many people. Approximately 1 million Americans live with Parkinson’s disease, with 60,000 new cases diagnosed annually. Nearly half of Americans (133 million people) live with at least one chronic illness, and the rates are increasing. Chronic diseases include cancer, diabetes, hypertension, stroke, heart disease, respiratory diseases and arthritis, among others.

Illness is also political because everyone needs affordable health care, including medicines. And, as the World Health Organization recognizes, access to this care is a basic human right.

Private insurance is a good option for those who can work and pay for it, though some say that most policies do not actually provide adequate coverage in the case of an extended illness. We also need less expensive options for those who lack private insurance or who risk losing it when their illness prevents them from working.

We may disagree on how best to provide lower-cost care, whether through a single payer system, private insurance, or other model. But we can agree that there is a problem and that something has to change. We should also agree that we are part of a vulnerable population for whom the risks and costs are beyond what too many in the current system can bear.

Those with chronic illnesses are a political force. Elected officials must pay attention to us and find workable, equitable, sustainable solutions, not only for ourselves but for the common good.

We are 133 million strong, and we have the ability to bring about a significant change. Now is the time for that change.

Allan Hugh Cole Jr. is professor and senior associate dean for academic affairs in the Steve Hicks School of Social Work at The University of Texas at Austin. Twitter: @allanhughcole