RDLA’s Rare Across America’s Virtual Conference on the HILL!

The end of February and beginning of March marked RDLA’s or Rare Disease Legislative Advocate’s Rare Across America’s Conference on the Hill.

RDLA‘s Rare Across America

Why is this important? The Rare Disease Congressional Caucus, a bicameral (both houses, Senate and House of Representatives) representative caucus on the Hill, which via RDLA and their advocates, bring legislation such as the STAT Act, and newborn screening to the floor of the House and Senate for approval and passing.

This legislation is not only important for the over 7000 rare diseases of which only 600 have diagnosis codes and treatments, if you can call most of them that, at this time, but Chronic Pain, and those being denied such in the realm of arthritis, and pain today due to the 2015 Chronic Pain Prescription Opioid Guidelines and DEA enforcement of said guidelines.

We know the opioid guidelines are affecting those without rare disease, but what about those with rare disease?

Sunsets are like alarm clocks because night comes with agony.

What about those with a rare disease and they have no way to diagnose or treat it? Chronic Pain for somebody who has Ehlers Danlos Syndrome cannot be managed with Tylenol and Motrin. It can’t be brushed aside with a smile and pat on the hand or fear of repercussions from the DEA.

A person who has their body screaming at them day in and day out and literally coming apart at the joints does not care about the fact that people on the street are dying from illegal formulations of fentanyl and oxycodone. All they care about is WHY THEY CAN’T GET THEIR LEGALLY PRESCRIBED PAIN MEDICATION, YES EVEN IF THEY ARE OPIOIDS, AND GET RELIEF FROM THEIR HELLACIOUS PAIN?

And the provider, lawyer, cop, DEA agent, CDC doctor, or anyone else who has the GALL to say it is because of the face they are “addicted,” may be “harmed,” or become “addicted,” have health “issues,” because of a dose they have taken for years, or any other lame excuse to perpetuate a LIE to further a Government-driven agenda to control the medical care in this country is not a friend to the CONSTITUTION OF THIS COUNTRY. PERIOD.

The RDLA and the Chronic Pain Alliance of the West are in agreement on this topic.

Wyoming is the Heart of the West. It lives and breathes Freedom, Liberty, and the American Way. Our health is as sacred as the air we breathe and the mountains we have around us.

Join us today as we remind our State and Federal Government what Liberty and Truth stand for in Wyoming when it comes to Chronic Pain and the Rights of those who suffer it.

Nobody, especially our government, has the right to steal our health for profit, power, or control.

Fear has no place in this fight. Only TRUTH AND TRUST. Stand tall and strong, Wyoming strong.

Our liberty to control that came when we fought for it and won that right to have it in the last 1700s.

Remember that war? What about the one that followed it? And the bloody one after that in 1818? And the Civil War? World War I when the entire bloody world was against us? Then again in WWII?

We don’t even want to think about 9-11, do we? Don’t you think we have enough enemies on this planet already?

The last enemy any citizen or potential citizen of this grand land we live in deserves is this United States Government. We need our Big Brother defending, not destroying our very existence. Enabling us to a livable, quality life, not judging and preventing how we must obtain it.

So next time, a friendly DEA agent visits you or your pain specialist, remember Chronic Pain Alliance of the West. We are here for you because you have done nothing wrong. Your provider has done nothing wrong. Unless you have??? Well, then that’s a whole other story! We’ll be able to know the difference, believe me.

You have done nothing wrong. Unless you have??? Well, then that’s a whole other story!

Chronic Pain Alliance of the West

If you are a Chronic Pain, Rare Disease, or Disable Pain Patient who pursues a quality of life by the treatment of pain via opioids, long-acting, short-acting, or a combination of both at high-doses, medium-doses or combinations of both, then you are not a criminal, addict, or worthless human being. You are not wrong. You have nothing to be ashamed about either.

You are a person who has chronic pain. And if you live in Wyoming, you are a Wyomingite with chronic pain!

Then what are you? Who are you?

Enjoy life, take your medications, and do not let anyone label you, convince you that you are anything, or anyone else, but above all, less than you are.

Let ‘er buck, Wyoming. Let ‘er buck.

Renee Blare, RPh

RDLA Advocate, Rare Disease and Chronic Pain Warrior, NORD Member