Rare Disease Report

RDR Editorial: AHCA Is it Bad for the Rare Disease Patient?

MAY 04, 2017
James Radke
Today, the House of Representatives passed American Health Care Act (AHCA). A total of 215 votes were needed to pass Congress and the bill received 217.
Now, the bill heads to the Senate. If approved, it will be delivered to the White House for it to be transformed into law.
The AHCA, while still a work in progress, appears to be unfavorable for those in the rare disease community.
“Today the House of Representatives passed American Health Care Act (AHCA). We are very disappointed the House pursued and passed this legislation, and we will continue to do everything we can to prevent this legislation as it is currently written from being enacted,” read a statement from the National Organization for Rare Disorders (NORD) shortly after the House vote was revealed.
At the heart of the issue with NORD, and many patient advocacy groups, is the uncertainty related to people with pre-existing conditions. In the rare disease community, many are likely to have a pre-existing condition and, through no fault of their own, must endure the condition and also the uncertainty surrounding who will pay for the various treatments needed.
The AHCA does not appear to ease any of that uncertainty. In fact, it seems to have created more. While President Donald Trump has stated the AHCA will cover people with pre-existing conditions, the ambiguity comes from the fact that the bill also wants to pass along responsibility of coverage to the States. It is there that things start to get murky.
According to NORD, the bill allows states to opt-out of critical pre-existing conditions protections, including the prohibition on annual and lifetime caps and community rating.
Furthermore, the bill allows states to set their own Essential Health Benefits (EHB) categories rather than complying with the ten Federal EHB categories.
NORD’s statement continued, “We strongly oppose this measure as it is unacceptable to once again expose rare disease patients to these draconian caps and cost-sharing requirements.”
Also in jeopardy with the AHCA are people dependent on Medicaid to cover their expenses – of whom, many are rare disease patients.
Rare Disease Report have been following the coverage of the AHCA all week. It saddens me that the debate over pre-existing conditions and State EHBs has largely focused on more common pre-existing conditions that people may have developed over time. On the other hand, rare disease patients never had that time. Most were born with a rare condition making them vulnerable from day 1.
Under the proposed State EHBs, they could be discriminated against from the day they were born and/or the day they were diagnosed. To paraphrase Jimmy Kimmel, “that is not the America I know.”
Rare disease patients, through no fault of their own, are being perceived as second class citizens. They did nothing wrong. They lost the genetic lottery. The costs of their treatments are higher, but when looking at the overall costs per population, they still only account for a small fraction of healthcare costs. Cancer, diabetes, hypertension, etc are still the dominate expenditures.
America is already great, but allowing a few children to receive enzyme replacement therapy that will keep them alive will not change the budget. But providing them that care – free of uncertainty, free of 5k fundraisers, free of 1 parent needed to stay home and care for the child, and free of obstacles – will be something that will make America even greater.

Following the House vote, Speaker Paul Ryan reiterated that the AHCA will protect 'our most vulnerable.'  Let's hope as the bill goes through the Senate and to the White House, that promise is kept and made clear to the rare disease community. We do not need anymore uncertainty in our lives. We really don't.

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