Why This Little Known Healthcare Law is Terrible for the Rare Disease Community

Few things are as frustrating and complex as the health care system in the US. Even the current President admitted to that fact.

So, like many people in the rare disease community, we’re downright terrified of what the future of healthcare is going to look like. The Affordable Care Act (ACA or Obamacare) is in serious danger of being gutted.

Three key components are on the chopping block:

  1. Mandatory coverage for people with pre-existing conditions (meaning everyone in the rare disease community)
  2. Requiring all insurance plans to cover essential health benefits (meaning hospital visits, ambulance trips, even doctor visits)
  3. Expanded access to Medicare (meaning anyone over 65 no matter how much they make, and also people on dialysis or young people who are disabled)

Unsurprisingly, that affects a lot of people in the rare disease community. If you’re not up to date on your politics because, honestly, everything moves too quickly now, here’s a little recap.

The Republicans in the House of Representatives drafted a Bill called the American Health Care Act (AHCA) which was first defeated in March 2017. It never went to a vote, in part because so many angry citizens went to town halls during the February recess and told their representatives exactly what they thought of this bill.

So, they went back to the drawing board.

Eventually, they managed to get enough support to get the bill passed, but with only Republicans voting for it. This vote was rushed through before the Congressional Budget Office (CBO) could do its proper analysis to see the impact of the bill. After the vote passed, the CBO score came out.

Over the next decade, 24 million Americans would lose health insurance and it would save $337 billion.

A number of those 24 million Americans would be Americans with rare diseases.

Then, the bill went to the Senate. There, 13 Republicans sat in closed door meetings to decide health care policy for the entire country. They repeatedly said they would not have any hearings to make amendments to the bill. By comparison, the ACA had hours of debate and included a number of Republican amendments.

These 13 men did not release the text of their document, the Better Care Reconciliation Act (BCRA), until last week. And boy did it drop like a bomb.

This bill is cruel.

It will take a longer time to make cuts to Medicaid, but the cuts are steeper and harsher than in the House Bill (AHCA). And while it says that insurers have to provide coverage for sick people, states can apply for waivers so insurance companies don’t have to cover essential health benefits. So don’t worry, you can still pay for insurance, but your doctors’ visits won’t be covered. For a great comparison between these ACA, AHCA, and BCRA, click here.

To make matters worse, the President refuses to pay the subsidies toward the ACA. That is causing instability and subsequently, is contributing to the reason health insurance carriers to pull out of markets, among other reasons. With all of this going on, there’s a key component people aren’t aware of: the Independent Payment Advisory Board (IPAB).

This board was written into the ACA and is to be created when Medicare is at risk of overspending its budget. This board has 15 members, who are chosen by the President and then go through confirmation by the Senate. If no board is selected, then all of its powers go to the Secretary of Health and Human Services (HHS).

So far, this board hasn’t needed to be formed. However, Medicare is on track to exceed its budget this year. That means all the power goes to current HHS Secretary Thomas Price, who has been a long-time opponent of the ACA, and who thinks AHCA is a good start.

My first thoughts: Is that really the person we want making decisions? And do we really want a board comprised of people who only want to take health care away from people?

If you don’t think so, then here’s what you can do:

  • Get informed. Read up on the IPAB and what exactly it will mean for you.
  • Get on the phone. Call your Representative and Senators and tell them why you want this provision repealed. There is already a Joint Resolution in both the Senate and the House. All they need to do it is pass it before August 15, 2017.
  • Keep calling. One call won’t do it. Better yet, get a group of like-minded people to call about this issue every day.

One thing I’ve learned this year is that after people get their ribbons and photo ops, they stop caring about the rare disease community. Let’s make sure they don’t forget us! It’s time to fight like our lives depend on it because this time they actually do.


Farrah Fontaine

Farrah Fontaine

As a child, Farrah Fontaine always knew she wasn't normal. Part of her family descends from the ancient Silk Road, which made her stand out in the Great White North. That's why she wants to give voice to the voiceless so they know they're not alone.

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