How Washington Can Change Rare Disease: Part Two



Part two of my series on how Washington can improve the lives of rare disease patients is discussing the Affordable Care Act, aka Obamacare. There has been a lot of controversy surrounding the legislation. While some good things have come out of it, there are numerous revisions that need to be made in order for it to truly help rare patients and their families.

Specialty tier drugs: While it may seem exciting that people with a pre-existing condition cannot be denied coverage, there is a catch. For those of us with rare conditions, we are subjected to orphan drugs, experimental treatments and long hospitalizations. I have spoken with people who have been told they would be responsible for up to 90% of the cost of their medications because it is deemed a “specialty tier” drug. So, what exactly is Obamacare covering at that point? Are rare disease patients and their families going to be forced to choose between treatment or paying the mortgage? When I looked around the health care marketplace for a plan for myself, I was blown away at the cost, the lack of information in regards to medications covered, etc. So sure, $150/month may seem great, but if I have to pay for 50% of an emergency IVIg infusion, I’ll go ahead and file for bankruptcy now.

All plans require pregnancy coverage: I was stunned when I started hearing from people my parents’ age (in their 60s) that their plans were being cancelled and premiums increased to include birth coverage. Some of these people didn’t own a uterus! Yet, they are forced to pay for a service they will never need. I am baffled at how Washington believes this is a good idea. Ultimately, these people are paying for other people to have children. There is no denying that we have an irresponsible reproductive issue in the United States, just turn on MTV and watch Teen Mom. Either way, this has to go. Rare disease patients don’t expect the American population to pay for us, so why make us purchase unnecessary coverage? Perhaps premiums, medication costs and out of pocket expenses would go down if plans didn’t have to cover expensive child-bearing costs.

Healthcare costs are rising: Obamacare has made the price of healthcare services skyrocket. Part of this is due to insurance companies not being able to deny coverage. This is where Washington needs to step in and push back at the lobbyists, why are things becoming more expensive? Why do patients receive a bill from the hospital for thousands of dollars after insurance has paid what they deem is appropriate? My insurance company sends me notifications of what the hospital is trying to charge vs. what they have negotiated. So I call the hospital and negotiate a lower bill for myself. I find this ridiculous! Some insurance companies will pay more for the same service for the same type of patient. Costs need to be streamlined. After a hurricane in Florida, it is illegal to price gouge, especially on things like gasoline, bottled water and generators. Why should healthcare be any different?

I am hoping that with a now Republican-controlled Congress, we will begin to see changes to the ACA that will benefit rare disease patients and the healthcare community as a whole. This is the perfect time to write to your representative and express your concerns about the Affordable Care Act and how it can be amended to assist rare patients.