I usually go on hiatus for the holidays, but I’m starting it a little early this year, because I have a lot going on right now with life in general and some writing deadlines (and a new book coming out next Tuesday). I’ll be back on January 8, 2025 (unless there’s something time-sensitive that occurs in the meantime).
I don’t usually get political here, but before I disappear for a break, there’s one issue that has a direct and worrisome bearing on the chronic hypophosphatemia community in the United States that you need to be prepared for if you live here. One of the stated objectives of the incoming administration is to repeal the Affordable Care Act.
You need to be aware that if they do that, anyone with a chronic illness is in big trouble. The Affordable Care Act (ACA) doesn’t just provide insurance plans for those who can’t get insurance through other sources, but it also prohibits insurers from 1. excluding coverage for pre-existing conditions, and 2. imposing a lifetime maximum on coverage.
Those of us with a genetic cause for our hypophosphatemia have a pre-existing condition from the moment of birth that, if the ACA is repealed, would allow insurers to refuse to pay for any treatment/services that are related to our XLH (or autosomal version). That includes doctor’s visits, x-rays, lab work, as well as burosumab (or phosphorus/calcitriol, although those are often excluded for other reasons already). It might even exclude coverage for parathyroid surgery (since it could be considered a consequence of the XLH), and kidney stones (a known symptom of XLH). I wouldn’t be surprised if they tried to exclude heart disease treatment/surgery, since there is some (very inconclusive and unpersuasive) research showing a correlation between elevated FGF23 and some types of heart disease. Want to see a doctor about hearing loss? Sorry, no coverage, because of the association of XLH and hearing loss. And if the Ensuring Lasting Smiles Act is ever passed, it immediately becomes moot, because it essentially makes dental coverage part of health care coverage for pre-existing health conditions, except without the ACA, there’s no coverage for any kind of pre-existing health conditions. Your child has craniosynostosis and needs emergency surgery to release the pressure on the brain? Sorry, that’s due to XLH, which is a pre-existing condition, so no coverage.
The other issue has to do with lifetime limits (and annual limits, but the lifetime one is more dramatic). A common lifetime limit for coverage, until prohibited by the ACA, was a million dollars. Sounds like a lot, right? But with today’s health care costs, it would easily be reached by an XLH child by the time they’re five (at the latest). Burosumab alone costs something like a third of a million dollars PER YEAR. So just three years of burosumab, even without adding in the cost of the necessary doctors’ visits and lab tests and x-rays, would hit that limit. Let’s say the limit is doubled to two million to adjust for the real value of the dollar — that just means the child would reach the limit by age six. The bottom line is that there’s really no likely lifetime limit that wouldn’t be met by an XLH child by the time they’re eighteen. With a five million cap, they’d be ineligible based on burosumab alone by fifteen. And then be uninsurable for the rest of their life (or at least until Medicare, although there’s no guarantee Medicare won’t start to impose the same limits)! That means no burosumab during growth spurts as a teenager. No burosumab as an adult. No heart surgery when they develop heart disease as an older adult. No preventive medicine (mammograms, colonoscopies) at any age unless you pay for it out of pocket.
You may say that just means that burosumab is overpriced, and this will cause the price to drop. Seriously? You really think that’s going to happen when pharma is already working on a “new and improved” version of burosumab that will enable them to keep charging top dollar by extending the monopoly on it? You think they’re not going to just raise the price, claiming that the market is so tiny that the price for those few who can afford it needs to be exorbitant to cover their costs? The only thing that would cause the burosumab price to drop would be for there to be legislation that mandates it, and since the main stated reason for repealing the ACA is to reduce regulation of health care and insurance, and the main supporters of repealing the ACA are insurance companies who don’t care about costs they won’t be incurring, and pharma will be lobbying against price controls, I can’t see any new legislation under the incoming administration that reduces what pharma can charge. Even if the price of burosumab dropped in half, that would just mean XLHers would be uninsurable by age thirty based on a lifetime limit of five million dollars.
Those who want to repeal the ACA will say that they’ll replace it with something else, something better. If there’s a new and improved plan, that’s great, but until it’s in place, we need the protection of the ACA with respect to both pre-existing conditions and lifetime limits. A repeal without a simultaneous replacement that includes protection for pre-existing conditions and a ban on lifetime limits, risks the possibility that the replacement will never be enacted, and would immediately render most of us uninsurable immediately. It’s a “show me the money” moment — we need to insist on legislators showing us the replacement protections and getting them in place before we can even consider supporting the repeal of the ACA.
And if, despite our opposition, it’s repealed without a replacement anyway? I really don’t know what to tell you. It’s one of the things that keeps me awake at night with worry for our community. I do enough worrying for all of us, and don’t want you to lose sleep too. But I do want you to be aware of the issue, and be prepared to oppose a repeal, so you won’t fall prey to the assurances that it’s fine, there will be a better health care law soon. It won’t be fine unless we make sure that the pre-existing conditions and lifetime limits protections continue. We need to be ready to fight, along with other rare-disorder communities, against the repeal of the ACA unless and until there is something reliably better in place, something specific, something we can read and confirm has protections with respect to pre-existing conditions and lifetime limits.
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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