STAT Act Beneficial for Adrenal Disease
The STAT Act (Speeding Therapy Access Today) was created to promote the development of treatment options for rare disease patients and to improve access to medications, protocols and methods to improve disease outcomes.
How does the STAT Act impact adrenal disease patients?
Adrenal insufficiency is a condition that renders a person cortisol deficient. In a normal person, during situations of emotional or physical stress their body releases more cortisol. The excitement from a happy event, the sadness from a death of a loved one or the strain from exercising are examples of things that would cause the body to release more cortisol.
In an adrenal insufficient person, this does not happen. They must artificially manage their cortisol with pills. Their personal cortisol needs may differ from day to day. No two days are the same and it is a struggle to regulate proper cortisol levels.
Unlike diabetic patients who can check blood glucose levels, adrenal disease patients have no meter to check their cortisol levels. They must be constantly vigilant of their own personal signs and symptoms of low cortisol and require an emergency injection if their levels drop too low.
Without adequate levels of cortisol, the body will go into an adrenal crisis, which will result in death if left untreated. Even when patients survive an adrenal crisis, they can be impacted by lowered quality of life as well. Therefore, it is imperative that the cortisol levels in the body are adequately replaced.
The standard treatment for adrenal insufficiency patients is daily cortisol replacement medication- steroids. Medications such as prednisone, dexamethasone or hydrocortisone are prescribed to replace the deficits of steroid hormone in the body. The most commonly prescribed steroid for adrenal insufficiency is hydrocortisone (HC) pills. This medication has a blood serum half-life of 90 minutes and must be taken multiple times a day.
A large number of adrenal patients struggle with quality of life on the standard protocol. Oral HC must be processed through the stomach and the liver before reaching the blood stream. This can cause a constant rise and fall of cortisol levels, which can result in subpar function and lowered quality of life.
Cortisol replacement advancements such as: time released steroid medications, compounded hydrocortisone and alternative delivery methods such as cortisol MDI (multiple daily injections) and the cortisol pump are not easily accessible. These treatments are legally prescribed, off label options which have documented research as being successful advancements, but due to not yet being FDA approved, most alternative options are not covered by insurance.
The STAT act supports methods that allow the FDA to accelerate and approve such therapies, therefore increasing treatment options for patients suffering from adrenal diseases that result in cortisol deficiency.
The passing of the STAT Act will not only broaden treatment accessibility for adrenal disease patients but also benefit many other rare conditions in need of better treatment options!
This is a step in the right direction for legislative advocacy, because all humans deserve the chance to experience quality of life, and this will open doors for many conditions.
How to support this bill
Our team was actively involved in Rare Disease Week on Capitol Hill 2022. We met with U.S. Congressman Byron Donalds and discussed our most recent advocacy campaign, Disabled NOT Defeated [Since updated to #AllAbililtyInclusion campaign ]
We also discussed the importance of his vote to support the passing of the STAT ACT.
Please take a minute to ask your members of Congress to co-sponsor the STAT Act today!
Place phone calls to your members of Congress in addition to sending emails.
You can find their contact information and a sample phone script here. https://everylifefoundation.org/stat-act/take-action/contact-your-member-of-congress/?vvsrc=%2fcampaigns%2f81582%2frespond&eType=EmailBlastContent&eId=d37f0b3d-c4ad-44c3-9fe0-3e7774a6a203
Adrenal Alternatives Foundation is grateful to EveryLife Foundation for the incredible advocacy work they do and encourage you to contact your representatives and ask them to support the passing of the STAT act!
Adrenal Alternatives is a proud member of Everylife’s community congress and represents adrenal disease in the United States Rare Disease Congressional Caucus.
We appreciate all contributions which allow us to further our mission, promoting disability advocacy and adrenal awareness. To donate safely and securely text the word GIVE to 833-807-5813.
Adrenal Alternatives Foundation is registered with the IRS as a 501(c)3 nonprofit organization. EIN: 83-3629121.