Open Letter to Lawmakers Concerning Obamacare

Dear Elected Officials:

I write to you today with growing concern over the talks of repealing the Affordable Care Act. There is no doubt that some things with the law are not working as intended, but there are many things that are working in the law. A repeal would hurt millions of working Americans financially and medically. Medical care is expensive even with the Affordable Care Act, but a repeal would make it wholly unaffordable for millions. Families would be forced to make the difficult decisions between putting food on the table or purchasing much needed medicines; going to the doctor or paying the rent. Millions will literally risk deteriorating health conditions because they have to keep a roof over their heads and food in their children’s bellies.

 Juliana at age 18 months

I want to tell you a story about my youngest child. Her name is Juliana and she is 4 years old. My husband and I adopted her from China when she was 20 months old. At that age, she could not walk. Once we arrived back in the United States and she had access to the American Medical System we learned that Juliana has a life-altering, rare metabolic bone disease called Hypophosphatasia. 1 in 100,000 people are diagnosed with this disease. It impacts her endocrine system and her bones are soft and breakable. Juliana went through months of stretching casts for her hands and feet and an Achilles lengthening surgery. She has at least two rodding surgeries on her tibias and surgery on 6 fingers in her future. She began walking at age 2 ½. Juliana lived in pain, so much so that she was developmentally behind because her tiny body was focused on survival. 

 Juliana in her AFOs and showing off her flexibility

 Juliana in her stretching hand casts and 

below standing after months of casting, AFOs and a surgery.

In March of 2016, Juliana began receiving injections 3 times a week of a newly approved medication called Strensiq. This medication is only for individuals diagnosed with Hypophosphatasia. The medication costs approximately $125,000 a year at her current dose. As a result of this medication, in just 6 months, Juliana experienced almost 4 inches of catch-up growth, she runs, jumps, rides a tricycle, potty trained herself, and is fully caught up developmentally. Best of all, she is in far less pain.

I’m telling you this story so that you can understand what a repeal of the Affordable Care Act would mean for Juliana and millions of Americans just like her. It is likely that Lifetime Maximums would quickly be reinstated by the insurance companies and Juliana would hit her lifetime maximum by age 6 or 7. The cost of her medication will rise as her dose increases. We are in no position to be able to save hundreds of thousands of dollars a year to afford her medication. The President-Elect has suggested that Americans can simply save for their healthcare. The vast majority of American families cannot save that kind of money in a lifetime, let alone each year. Sending my daughter back to a lifetime of pain is unthinkable. Additionally, insurance companies would likely reinstitute pre-existing condition clauses and would deem her uninsurable along with millions of other Americans who have pre-existing conditions (cancers, diabetes, auto-immune diseases). The Affordable Care Act also puts limits on the amount that deductibles can be on a yearly basis. How long until those too rise to levels that would be catastrophic for families? They are already as high as $14,300, and frankly, these levels are already too high for many families. How long until they go to $25,000 a year, or even $30,000? These kinds of deductible increases are not just unaffordable, but would bankrupt millions of hard working Americans.

I implore you to, please, consider making amendments to the law to fix those things that are broken rather than a repeal; and above all, please keep the things that benefit millions of hard working Americans who are doing everything in their power to care for their families in the best way that they can. Please don't play political games with the health and bank accounts of millions of Americans at risk.

Sincerely,

Rebecca Raguso