Today, President Trump received an investigational drug for COVID-19.

While my off-label therapy is FDA approved for other conditions (but not mine), @realDonaldTrump and I have some things in common.

I’d like to talk about that, and the future of drug development.

A thread

For those curious about REGN-COV2, here’s a link about the drug: https://investor.regeneron.com/news-releases/news-release-details/regenerons-regn-cov2-antibody-cocktail-reduced-viral-levels-and

In very simplistic and unscientific terms, President Trump is being treated by a drug that impacts the way his immune system operates. I have done something like that myself. Ultimately, I shut down my B cells so they stop killing my platelets.

When you get sick and there is no FDA-approved therapy to control your immune system response, it can be very scary. In my case, the immune system mistakenly kills platelets by creating antibodies. In the President’s case, he needs to build up antibodies for COVID-19.

In both situations, many things can go wrong. The immune system is very complex and sensitive. I’m sure the President understood the risks before receiving treatment, just as I have. And then there’s the wait, the hope, and some anxiousness for a positive result.

This experience is replicated day after day by patients all over the United States, many of them taking a chance to try and control their disease/condition. Some get easy access to medications, others have to fight nasty battles for FDA and/or insurance approval.

During the process of creating 21st Century Cures Act, I pushed hard for the OPEN Act. I am alive because I repurposed a drug, and I feel that we need to get all 7,000 rare diseases a treatment, so we need more drug repurposing via clinical trials of things already on the market.

While the President is using something that has not been approved by the FDA, he is going through a similar situation that so many patients face every year. And I would like to believe he will be receptive to helping us make access to therapies much easier.

I immediately thought of @CoreyPolen @dutchsmitty @Terrilox @LauraMclinn and so many others who have advocated for access to potential therapies working through the FDA process, and those that are off-label.

We have patients in the #ALS and #gutparalysis communities who are fighting for access to life saving treatments being held up by the FDA.

We have #ITP patients fighting with their insurance companies to access my drug, Rituxan. It’s not FDA approved for ITP

We have some great legislation in the pipeline- The Promising Pathways Act and the HEART Act can benefit patients and the rare disease community tremendously.

1 in 10 Americans has a rare disease. It’s not so “rare” when you consider total numbers.

We have seen lightning fast reviews coming from the FDA for COVID-19, and I suspect that if @realDonaldTrump has a positive experience with REGN-COV2, he will be pushing for a quick approval.

But Mr. President, we need your help too.

I’m not a big advocacy on social media gal. I much prefer to hop on a plane and sit in offices on Capitol Hill to discuss what over 30 million Americans need. But with this virus, that’s not possible. So I’m giving Twitter a shot.

This may be the only time in my life where I will have a President who experiences a similar health situation where he can relate to what I have been through, and what I am fighting for.

So @realDonaldTrump, when you feel better I need your help.

We need to fix a very broken FDA, which while it houses so many brilliant minds, it’s impossible to have employees that truly understand rare diseases. Especially those that impact patient populations under 1,000 people in the US. And treatments? Forget it, we get stuck.

We need help from the Oval Office and Congress to make the changes necessary to streamline the drug development process with the same sense of urgency we have seen with COVID-19. I am certain we can treat rare diseases in the same fashion.

So if you’re on board with this idea, or can plant a seed with the President that myself and some other patients would like to have a conversation about this, drop a reply below.

As always, once I’m able to, I’ll be walking the halls of Congress to make this happen. But I want to speak with our President, because I think between our experiences, we can make some magic happen for patients.

Let’s get cures and treatments to the people, faster.