I’ve been doing a lot of writing lately because it is therapeutic during a time of such chaos in our country and in the Rare Disease space. We have experienced so many major setbacks since December and it is difficult to remain focused and not throw in the towel entirely.

Imagine seeing everything you’ve worked toward be thrown out the window by people in power who don’t understand the impact of their actions. How would that make you feel?

Tori’s Tenth Anniversary of Diagnosis

Today is the tenth anniversary of Tori’s diagnosis with Krabbe disease, and I had planned to focus on the positives we’ve seen happen in those ten years with expanded Newborn Screening, clinical trials, etc. There have been GREAT strides made with twelve states actively screening for Krabbe disease (there were two in 2015) and 5-6 more planning to begin this year.

But, all of that is overshadowed by the shutdown of our gene therapy clinical trial last month, and the undeserved assault public health is receiving at the federal level (which impacts states).

Why NIH Funding Cuts Matter in Rare Disease

The Impact of Recent Decisions on Rare Disease

Between the NIH funding cuts (about which I wrote an opinion piece), the lawsuit about 504 plans being unconstitutional, and the threats to Medicaid funding, I’m exhausted. Medicaid is essential in Rare Disease; it’s an equalizer to ensure that every child eligible for life-saving treatment can receive it, not just the wealthy.

But, Medicaid doesn’t only impact Rare Disease – these cuts would have drastic impacts on millions of people with disabilities, including my family.

To be honest, it’s been a difficult journey for me with needing to continue to advocate so strongly for my children to have their disabilities cared for after spending ten years doing so for Tori/Leukodystrophy/Newborn Screening.

It’s my job as their mother to do this and we’re SO proud of our boys, but it’s something we didn’t expect and it impacts many aspects of our lives (including the amount of time I can work).

And I’m feeling weary because of the decisions being made that are beyond our control. Decisions being made by people who clearly don’t understand what they are doing.

How Medicaid Cuts Will Impact Us

Much like when I shared my student loan numbers when there was an outcry about potential forgiveness, I’ve found that it helps to hear from actual families and people impacted by potential policy changes.

Being willing to listen to understand those willing to share their personal experiences can change minds.

So, here’s our Medicaid story.

Our children have moderate-severe hearing loss.

• Did you know many primary insurers (ours included) exclude hearing-related services from their coverage?
• Did you know that hearing aids for children are $5,000 a pair? That’s not including the tests, adjustments, audiology appointments, etc. that our primary insurer will not pay.
• Additionally, we pay $800 OUT OF POCKET each month for speech therapy and occupational therapy because most providers around here won’t take Medicaid/MA
  • This is due to low reimbursement rates, failure to pay, etc.
  • The only thing MA has covered for us has been their hearing services, for which we are SO grateful, but it hasn’t relieved much of our overall burden.
  • It’s also a system that is extremely difficult to navigate, so the allegations of abuse are interesting to me because if you can’t figure out how to use the system, how can you abuse it?

Financially, it’s incredibly challenging to have children with special needs/disabilities and we have TWO of them. Our job as their parents is to give them every opportunity for a full life, starting with helping them hear. And the federal government is making that an extremely challenging endeavor.

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Cutting Medicaid Funding isn’t the Solution

We only qualify for Medical Assistance (Medicaid) because of their diagnoses; we “make too much money” otherwise (which is humorous). The cut-offs are extremely low and while I’m sure some shouldn’t receive benefits, I know from experience that most don’t even receive the benefits for which they qualify.

How will Congress decide who can stay on Medicaid and who will be removed?

While I’m sure improvements could be made, huge cuts like this are not the answer. In fact, the real answer is in ADDITIONAL funding.

In my advocacy work, we so often encounter states unable to add various conditions because they cannot treat them instate, which is a requirement for many state Medicaid programs. While there are efforts to change that at the federal level (which Congress chose to not include in their end-of-year package in 2024), the reality is that there are great disparities from state to state and the wealth of your family can determine whether you live or die.

It doesn’t have to be this way.
The United States chooses to be this way.

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I share all of this to hopefully make you think about the implications of these policy proposals.

Remember that your political party is not immune from terrible decisions (or even immoral ones), no matter which side of the aisle you are on.

This is why I continue to write and speak about PRINCIPLE OVER PARTY – most issues should never become partisan.

PLEASE take action and call your elected officials. This would lead to a crisis for millions of people and we cannot be silent.

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I will close by sharing a quote from this piece:

“Some have claimed that older adults, those with disabilities, pregnant women, and children will all be protected. There have even been claims (especially in the case of cuts to working age adults) that these changes are necessary to protect these populations. Obviously these claims are not simply wrong but completely disingenuous. There is simply no way to protect any beneficiary from the impact of far-reaching Medicaid spending reductions. Medicaid is perhaps the nation’s most complex federal health care program, and each element of the program is inextricably connected to the other. Taking unprecedented sums out of Medicaid would hurt everyone. Period.”