Here is the letter I wrote to my senator today:
June 13, 2017
I am writing to you today to express my concerns about the proposed healthcare legislation currently begin considered by the Senate. My concerns are many and very personal.
My seven year old son Caleb was diagnosed with cystic fibrosis when he was three weeks old. As you may know, CF is a genetic condition that affects several body systems and has a current life expectancy of forty-one years. In the 1950’s children born with CF were not expected to survive long enough to attend elementary school; now people with CF are living into adulthood, having families and careers of their own. These incredible improvements are the direct result of improved access to preventative care and cutting-edge therapies.
There are only 30,000 people currently living with cystic fibrosis in the United States. As you can imagine, the financial cost of keeping Caleb healthy is very high. In fact, without insurance, my husband and I would be completely unable to cover even one year of Caleb’s medical bills with all of the savings (including retirement) we have been able to accumulate since entering the workforce almost twenty years ago. Even basic preventative care for Caleb would be impossible outside of health insurance and one hospital stay, an inevitability in the lives of most with CF, would bankrupt us.
Caleb is currently very healthy and we have tremendous hope for his future. Without access to his daily medications and treatments, however, CF becomes a death sentence. While Caleb remains healthy, my husband and I can both continue to work and Caleb can attend school. Changes in his access to quality healthcare threaten more than just his health.
I will be honest, Senator; I am afraid. I can’t imagine knowing it is possible to extend and improve the quality of my child’s life and not be able to afford it. High-risk pools for the chronically ill are not the answer; even the most generous subsidies would not make the cost of Caleb’s medical care within our reach. Lifetime limits scare me to death and I hope we never go back to the dark days of pre-existing conditions.
My husband and I are both educated professionals, working hard to support the economy of this great state. We are conscientious in our decision-making, save for the future, and try very hard to “play by the rules”. We did not ask for our child to arrive with these special needs. We pray for a cure, and in the mean-time, we do all we can to keep Caleb healthy.
Please consider carefully the decisions you are making in the coming days. Your actions will have the greatest impact on your most vulnerable constituents. We have no way of protecting our son’s access to affordable, quality healthcare. For that, we are counting on you.