Randi Clites

While it’s too late to get a lunch, if you’d like to join us tomorrow you can still sign up to attend a portion of the Rare Disease Summit. We have room for about 10 more attendees. Agenda on our page & register as a speaker to get your parking pass. littleherculesfoundation.org/events/rare-di…

Never did I ever think I’d repost in support of REP MTG…but here we are.

I hope there’s a doctor in the hearing room Sec Kennedy when not talking sounds to be struggling to breathe….

Please take action and ask Gov DeWine to veto the abolishment of the Rare Disease Advisory Council. rareaction.org/take-action/#/…

It’s rumored that the Ohio Rare Disease Advisory Council has been abolished because it was “not doing anything.” While I was in Washington State sharing the work we’ve done as the co-chair. We have become national leaders on advising the administration and lawmakers.

Oh @PeteButtigieg is mad

@Nbd_Foundation #NBDF and #WashingtonDays2025 great start to our day with Senator Moreno

It was great to connect with @EmiliaSykesOH on the priorities of the @EveryLifeOrg #RareDC2025 Hill Days.

While Republicans start their work tonight on a bill to cut your Social Security and Medicare benefits, Democrats are working to make your life better, safer, and more affordable. Here are 10 of the amendments I filed to the Republican budget bill 🧵

Despicable. As families grieve, Trump should be leading, not lying. We put safety first, drove down close calls, grew Air Traffic Control, and had zero commercial airline crash fatalities out of millions of flights on our watch. President Trump now oversees the military and the FAA. One of his first acts was to fire and suspend some of the key personnel who helped keep our skies safe. Time for the President to show actual leadership and explain what he will do to prevent this from happening again.

This gives an overview of the total effect last nights federal pause on funding will have on Ohio’s ability to function. Federal grants and assistance is ~40% of our operating budget. 1/3

I ran @USAID health programs for the last 3 years. Trump’s 90 day Stop Work Order on foreign assistance does serious damage to the world and the US. Examples:🧵

🧵 If you've been hearing about Trump firing 17 Inspectors General and wondering what their roles are and why this matters, you're not alone. Here’s a simple breakdown of what IGs do, the significance of these firings, and the potential implications for the future. (1/15)

@DCNDailyCrypto @troymc94 @Dennis_Porter_ @steve4ohiohouse It may not have been sent to all members. Before introduction it is by invite only to cosponsor a bill in Ohio.

@troymc94 @Dennis_Porter_ @steve4ohiohouse Thank you. Sadly no Democrats

MASSIVE BREAKING: A new bill enabling Ohio to create a 'Strategic Bitcoin Reserve' with 6 co-sponsors has been introduced in the state of Ohio by Majority Whip @steve4ohiohouse. Key notes about the bill: 1. The state can allocate up to 10 percent of its general fund, budget stabilization fund, and the prizes trust fund into Bitcoin. 3. Robust custody solutions are laid out ensuring the state uses self-custody or a qualified custodian. 3. The bill is tech neutral and uses the term 'digital asset' to reduce political friction ensuring the state can move rapidly to protect the purchasing power of its funds from runaway inflation. 4. A $750 billion market cap must be met to qualify for the reserve ensuring that as of today only Bitcoin qualifies - this metric also requires an average of 12 months further ensuring stringent requirements are met to qualify. This bill is a bold move with strong support by leadership and a total of 6 co-sponsors, further boosting its chances of passing into law. We fully support and endorse this bill and we will be working closely with the bill sponsor and advocates to ensure this legislation becomes a reality.

Seeing 👀 the Competitive Enterprise Institute who defends #PBM as free market have $10 million in non transparent contributions as a non profit reminds me: Our @Free2CareHC coalition calls for what I called #sunshine4all Just as I as a physician am on a sunshine database that shows how much I take from pharma and devices, there out to be a similar transparent 🌞 easily searchable database, showing 💵flow not only for physicians/pharma/devices, but for money flow between think tanks, newspapers, PBM, GPO, distributors, physician advocacy groups and more

@A_Ciaccia @NateWeixel @Jim_Jordan Wish they would also ask about copay diversion programs while they are asking! Who is pocketing all the copay assistance collected on behalf of a patient when it doesn’t actually benefit the patient counting towards their out of pocket costs?

When it rains, it pours. @NateWeixel @Jim_Jordan thehill.com/policy/healthc…

@CongMikeSimpson thank you for the very important hearing on Missing and Murdered Indigenous Women. I am a Rare Disease advocate but had on CSPAN while working on a project as background and learned so much. Thank you to the very brave women who testified.

Throwback to when I saw the access issues about to come and tried to get our hemophilia providers and the PBM to work on addressing the issues around high prices. Boy I really had no clue how bad it would get…

@rooster_ohio Portage county was averaging 1-2 hours just about all early in person voting, with the last 3 days over 2 hours. Almost 35k of our 118k registered voters have engaged in early vote. Maybe we are going back to voting across party lines here.

Thank you to @mh4oh at @econliberties for brining together a roundtable to address PBM issues. It was an honor to represent patients with Bil, a dad that lost his son to a PBM access issue, and lawmakers, pharmacists, wholesalers, regulators, and thought leaders.