Surviving the Healthcare Hunger Games

Will the Primary Immunodeficiency Community Be the Victor?

Over the last couple of weeks, the news coverage around healthcare has me feeling like I am gearing up for the next Hunger Games. For anyone that has not seen the movie, it pits 2 selected children from 12 different districts against each other in a fight to the death. The games are supposed to be a reminder to everyone what happened when their last rebellion failed, a better synopsis can be found here, but you get my point. As I watch the news or read the paper anymore, I feel like everyone with a chronic illness or disease is being labeled as the problem and we are about to enter the arena in a fight to the death because a rebellion is coming soon. 

I am not going to be able to tackle all of our healthcare woes in one single post. I hope that we can use the Immune Competence blog as a way to address certain issues and start a healthy dialogue around what we see in the news. Let’s jump right in to the Affordable Care Act a.k.a. Obamacare. It was first and foremost a way at tackling access. There is a great book that looks at how the Obama Administration went about tackling healthcare, America’s Bitter Pill by Steven Brill. One of the biggest takeaways is that as the administration took on healthcare, a major campaign promise, they realized there are two issues in healthcare, access and cost. The administration realized they could not tackle both; there was too much resistance so they went after what they considered the low hanging fruit, access to care. 

By all accounts Obamacare did what it was supposed to do, gave an estimated additional 20 million people access to care (Kaiser Family Foundation Estimates of Coverage, Oct. 2016). Notice that I have not mentioned that it gaveaffordable access to care. Remember that cost was not on the table, only access. There were certain additional entitlements that were built into the bill that were widely celebrated, especially by those people like myself who have a chronic illness. 

- Eliminated the lifetime cap on expenses. I think we all remember the days of adding our yearly explanation of benefits costs and realizing how many more years we had until we would hit our lifetime cap. I remember doing that when I was 21 and that is a daunting thing to be faced with at that age. 

- Eliminated denial of care for pre-existing conditions. A huge win for anyone with a rare and chronic illness-requiring a lifetime of care. 

- Finally, children could stay on their parent’s insurance until they were 26. This kept a younger and healthier population in the risk pool, essentially helping to balance out all of those patients like us. 

Now, I am going to say something probably rather controversial, but it needs to be said: healthcare is still broken. Obamacare took a stab at some of the low hanging fruit, but there are still things that need to be fixed. With that said, the newly introduced American Healthcare Act is not that bill. I am not sure how it can promise access, while still lowering cost. Especially when lower cost means House Republicans are attacking the very entitlements that were gained under Obamacare. 

The most disappointing thing I have seen in the coverage of healthcare came as I was watching the news last week. Specifically about the American Health Care Act passing the Ways and Means committee. I watched Representative Kevin Brady, Chair of the House Ways and Means Committee, defend the current version bill on live TV. For those of you that forgot, Representative Brady had been a strong advocate with those for rare disease. He helped introduce H.R. 1845, the Medicare IVIG Demonstration Project and helped get it passed. I was quite shocked to see that sensibility had been lost. Even if the Republicans force this down our throats with out any Democratic support, it tells me that instability will remain because we will see the other side attack this as soon as they can get a majority. 

While the Affordable Health Act appear to be the battle right in front of us, it is important to make sure we are not being flanked by other issues. Unfortunately, patients diagnosed with a Primary Immunodeficiency are being flanked on a couple of different sides. The 21st Century Cures Act, by all means was a huge success for providing research money to cancer and other diseases. The problem in Washington D.C. is that for every bill like this you have to have what’s called a “pay for,” as in: how do we pay for this?

Part of the pay for under the 21st Century Cures Act is lowering reimbursement for the supplies required for infusions that use a pump or other durable medical equipment. This provision became effective as of January 1, 2017 and has direct consequences for those patients on Medicare that use SCIG at home. The bill added a new benefit for Medicare that will reimburse for essential equipment and services, which would have counteracted this, but it is not scheduled to go into effect until 2021. The Immune Deficiency Foundation and other advocacy organizations are currently looking at getting the reimbursement rates moved up from the 2021 start date. As we speak, some Medicare patients are receiving letters from their Specialty Pharmacy informing them that thanks to this act they can no longer provide SCIg infusions because the reimbursement rate has fallen below the cost to purchase and provide the product.

I wish I could say it stopped there. According to the Washington Post on 03/11/2017 there is a bill in a U.S. House Committee that would impose hefty penalties on employees who declined to participate in genetic testing as part of a workplace wellness program. Currently, this is protected against under the genetic privacy and nondiscrimination law. If you choose to not participate in a workplace genetics study under a wellness program, your company could impose a 30% penalty on your insurance benefits. According to the Post article, “70 different advocacy groups have already sent letters opposing the bill.” House Republicans are on another level with theirhealthcare ambitions, so I am not holding my breath. 

I don’t want to be all doom and gloom, I was encouraged that Congressman Elijah Cummings (D-MD) recently had a meeting with the President to tackle prescription drug prices. It sounds like it was a hopeful discussion, but there are a few other hurdles we need to jump before we tackle this item. The most important thing we can do as a patient community is to understand how these things will affect us. Understand the talking points and the different views being expressed with-in our community. Knowledge is power and it is important we get our say in these matters. So what can you do to stay informed?

- Are you watching and reading the news? The IPhone has a news app where you can sign up for alerts and follow the issues that are important to you. Great article on setting this free feature up on your IPhone:

- Stick with sources you trust, I read the Washington Post and the Wall Street Journal. I found a great map that shows where different news mediums lay on the political spectrum:

- If you are not sure about an issue, ask! That is why Lisa and I started this project to help disseminate correct information into our patient community.

- Get involved: write a letter, the Immune Deficiency Foundation has action alerts where you can add your story and email all your representatives.

- Once you email them, follow-up, call their local office, call their D.C. office and ask where they stand on the issues. Know your “ask” when you call, “please oppose or support xx bill in the house because patients like me rely on it.” 

- Not sure where to start? Comment below and lets get a conversation going! 

- One of the BEST sources of healthcare information I have ever found is the Kaiser Family Foundation, which can be found at

These issues are not going away and I can tell you I am ready for the fight ahead. Stay current and subscribe to our newsletter, and/or like us on Facebook @immunecompetence. If you have additional resources to add, please post them in the comments section below. We look forward to hearing from you.

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