The following letter first appeared June 2, 2021 in the Detroit News.

Letter: Help Michigan patients afford critical treatments

What happens in Lansing matters to those of us living with chronic and rare diseases. Sometimes diseases. Sometimes, legislation can make all the difference in the world — even the difference between a healthy life or an endless and deadly cycle of illness and debt.
That’s particularly true right now, as the state Senate debates one important, bipartisan bill, House Bill 4353. This legislation would help patients afford their treatments by ensuring copay assistance — a lifeline for many people, including me — counts toward our deductibles and out-of-pocket maximums.

I am one of millions of people living with a rare disease. In 2009, I was working as a manager and special needs educator at a children’s hospital helping kids with autism and communication delays. Suddenly I found myself terribly ill.

I was diagnosed with Common Variable Immune Deficiency, or CVID, which means my body struggles to make antibodies even when given an immunization. My immune system is dysfunctional. There is no cure, but there is a treatment.

That treatment is called gamma globulin infusions derived from plasma donations that contain the antibodies I need to stay healthy. I need these infusions weekly, and they are not cheap. In the decade that I’ve been taking this treatment, I save every penny that does not go to food, rent or other basic living expenses to pay for my health care.

Thankfully, I have found a copay assistance program that helps me cover some of my out-of-pocket costs.

For cancer patients, individuals with rare and chronic illnesses, and families whose children suffer from devastating diseases, copay assistance is a godsend.

Now health insurance companies are taking it away.

The trend started several years ago, and this year in Michigan, every plan on the public exchange includes a devastating policy called a “copay accumulator adjustment program.” This change prohibits copay assistance payments from being counted toward a patient’s deductible and annual out-of-pocket maximum.

For me, that meant thousands of dollars in new and unexpected health care bills this spring. I found a copay assistance program willing to pay $5,000 toward my drug costs this year — the vast majority of my health insurer’s roughly $7,000 annual deductible and out-of-pocket max.

Imagine my surprise when I was told my insurer allowed the $5,000 payment from my copay assistance but did not count it toward my deductible or out-of-pocket maximum. As a result, I received no financial benefit from the copay assistance and had to come up with over $3,700 on very short notice or go without my lifesaving infusions.

This legislation would ensure copay assistance actually counts for patients. It would make a big difference in the lives of real people who need it the most.

Leslie Baldwin, Linden