STAT Act Beneficial for Adrenal Disease

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.

Sign up for our member email list to get the latest updates.

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.

Advocacy Update- Fall 2021

To save the life of a cortisol deficient person in the event of an adrenal crisis, an emergency cortisol injection must be administered. But unfortunately most EMS personal in the United States are not only unware of this, but are not legally allowed to administer patient medication and most ambulances do not carry emergency cortisol injections onboard.

Adrenal Alternatives Foundation is actively working to change this on a federal, state and local level! We recently visited the campus of EMC Medical Training – Emergency Medical Consultants to provide materials and education on how to recognize and treat an adrenal crisis. This school not only trains EMS personnel but also offers CPR, First Aid, IV Therapy, Phlebotomy, EKG and Emergency Airway Management to all medical professionals.

Our goal in providing this school with copies of Adrenal Insufficiency 101 , EMS protocols for cortisol deficient conditions and pamphlets on how to manage an adrenal crisis is to prepare medical professionals who attend their classes to be able to recognize an adrenal crisis and know how to administer an emergency injection.

Photo of EMC Instructor Lauren and AAF team member, Winslow E. Dixon

You can get involved too! Call or visit your local fire house and EMS station and advocate that they add adrenal crisis protocols. You can download full instructions on How to add Adrenal Crisis Protocols to your city’s EMS program from our website.

We appreciate all contributions which allow us to further our mission, improving access and awareness to all cortisol care options.

Donate to Adrenal Alternatives Foundation

Sign up for our member email list to get the latest updates.

Advocacy Update- No Patient Left Alone Expansion Proposal

Adrenal Advocacy Update

Adrenal Alternatives Foundation and CHronic illness advocacy & awareness Group (Ciaag) have joined together to address the serious issues COVID-19 restrictions are having on millions of citizens with rare diseases and/or chronic illnesses. Patients with continuous ongoing treatments such as dialysis, chemotherapy and IV infusion medications, now forced to be alone during these already difficult treatment sessions. This increases their suffering and has potential mental health implications, which then can adversely impact their overall health and wellbeing. 

There are great concerns regarding the increased potential for patient endangerment and medical errors in patients with rare disease protocols without caregivers and advocates present. Facilities, hospitals and treatment centers are citing COVID-19 as the rationalization behind restricting visitor access are not complying with the requirements of the Americans with Disabilities Act (ADA) which clearly states in Titles II and III that health care facilities are mandated to provide reasonable accommodations for persons with disabilities. 

These accommodations can include visitors who provide the patient with necessary support services, including communications, behavior/emotional support, and support managing the patients medications and other unique needs. There are several federal disability civil rights laws that apply to hospitals including, but not limited to, Title III of the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act (RA), and Section 1557 of the Patient Protection and Affordable Care Act (ACA). All of these statutes protect people with disabilities yet facilities, medical centers and hospitals across the nation are denying chronically ill patients a basic human rights of support and comfort of a loved one during medical experiences, citing COVID-19 restrictions as the reasoning. The ADA, RA, and ACA laws are still enforceable during the the COVID-19 pandemic.

The United States Department of Health and Human Services’ Office for Civil Rights issued a statement specifically reminding hospitals that they must “keep in mind their obligations under laws and regulations that prohibit discrimination on the basis of disability” and that the federal disability rights laws “remain in effect” even during the COVID-19 pandemic.

Our Proposed Solution: Standard legislation that mandates medical centers must follow existing guidelines in Title III of the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act (RA), and Section1557 of the Patient Protection and Affordable Care Act (ACA). There needs to be legislation that allows chronically ill patients to have a caregiver with them during medical procedures, treatments and surgeries even during a pandemic. 

Bill Proposal: Expanding the SB 730 – No Patient Left Alone Act BILL ANALYSIS: S730 contains the “No Patient Left Alone Act” which ensures the visitation rights of hospital patients during a period in which a disaster, emergency, or public health emergency has been declared.

GOAL: Proposing expansion on the No Patient Left Alone Act, originally passed in North Carolina. We are proposing a standard protocol outlined in a legislative bill that will mandate nationwide protocols that allow chronically ill patients to have a caregiver with them during medical procedures/treatments. 

If you would like to support our efforts please sign: Petition to Expand the SB 730:The No Patient Left Alone Act

If have been denied these rights: Print the DISABLED COVID RIGHTS PDF and provide it to the medical facility who has denied you.   

Remember, It’s Important to Know Your Rights!

SIGN THE PETITION, CLICK THE LINK HERE

Further reading can be found at the links below:

Covid Rights Initiative- Adrenal Alternatives Foundation

Hospitals Must comply with ADA rights

Supporting Family Caregivers in Providing Care

Supporting Family Caregivers in the Time of COVID-19 – State Strategies 

Hospitalized Adults need their caregivers – they aren’t visitors 

Caregivers are missing from the Conversation

SB 730 – No Patient Left Alone Act

This information has been brought to you by the Adrenal Alternatives Foundation and is not to be used to provide medical care or legal advice.

We appreciate all shares, contributions and donations which allow us to continue our mission, advocacy and access for all cortisol care.

Adrenal Advocacy Update – Summer 2021

Adrenal Advocacy Update: Summer 2021

Adrenal Alternatives Foundation is proudly representing cortisol deficiency in the rare disease congressional caucus. We are also proud to be a part of Rare Disease Week on Capitol Hill.

During Rare Disease week on capitol hill 2021: We are voicing our support of the following legislation:

The STAT Act

The Safe Step Act

The Benefit Act

we are also asking for attendance, endorsement and support FRom congressional represenatives foR OuR Upcoming disability inclusion event.

You can get involved too!

Contact your local representatives and ask them to co-sponsor the STAT Act, Benefit Act and the Safe Step Act to benefit all rare disease patients!

You can also invite them to attend the Disability Inclusion Event!

This information was brought to you by the Adrenal Alternatives Foundation for educational use only and is not meant to provide medical care or legal advice.

Sign up for our member email list to get the latest updates.

Surgical Guidelines for Cortisol Deficiency

Surgical Guidelines for Cortisol Deficiency

*This information is for educational use only and is not to be used to treat or manage any condition*

During a surgical procedure, a cortisol deficient patient’s body will require an increase in steroid dosing to replace cortisol. Researchers[1] have reported that in non cortisol deficient patients, HPA axis function during and after surgical procedures causes plasma cortisol levels to increase significantly. In patients without the presence of adrenal insufficiency, cortisol production rates have been shown to increase to 75–150 mg/day after major surgery.

In cortisol deficient patients, the recommendations differ depending on the length and severity of the procedure being performed. Cortisol deficiency patients will always require additional glucocorticoid supplementation during surgical procedures, but there is no uniform standard accepted regimen for glucocorticoid replacement therapy.

It is the best clinical practice to treat the patient instead of following a textbook response. If a patient with cortisol deficiency is declining, the administration of more cortisol should be a first line treatment protocol.

Anytime a cortisol deficient person is going under anesthesia, intravenous cortisol replacement medication must be administered.

If you have cortisol deficiency, be sure you alert your surgical team that you are cortisol dependent before your procedure and have a clear plan for your steroid dosing pre, during and post procedure. Any surgical team who refuses to administer steroids should be reported to medical authorities. Adequate steroid coverage is essential to the well being of cortisol deficient patients.

suggested Surgical Cortisol replacement recommendations: [2]

*DISCLAIMER* There is no universally agreed upon standard dose or duration of exogenous steroids used to treat adrenal insufficiency. Clinicians must be observant of a patient’s vital signs, empirical evidence and quality of life. It is also imperative clinicians be aware of the symptoms of adrenal crisis, which can widely vary in patients. In the event these symptoms should arise, an immediate dose of glucocorticoids should be administered until patient stabilizes.

For Minor Surgery: Double or triple the usual daily dose of glucocorticoid until recovery. Intravenous hydrocortisone 25 mg or equivalent at start of procedure. Usual replacement dose after procedure.

For Dental Procedures: Under local anesthesia, double the daily dose of glucocorticoid on day of procedure.  Inject 100mg emergency cortisol injection if patient presents with adrenal crisis symptoms.

For Moderate Surgery: Intravenous hydrocortisone 75 mg/day on day of procedure (25 mg 8-hourly). Intravenous hydrocortisone 25 mg 8-hourly until recovery. Taper over next 1–2 days to usual replacement dose in uncomplicated cases.

For Major Surgery: Intravenous hydrocortisone 150 mg/day (50 mg 8-hourly) Taper over next 2–3 days only once clinical condition stabilizes.

For critical illness/intensive care/major trauma or life-threatening complications: 200 mg/day intravenous hydrocortisone (50 mg 6-hourly, or by continuous infusion)

This information was brought to you by the Adrenal Alternatives Foundation for educational use only and is not meant to provide medical care or advice.

Download a PDF of these surgical guidelines HERE

You can find more information on how to manage cortisol deficiency in our publication, Adrenal Insufficiency 101: A Patient’s Guide to Managing Adrenal Insufficiency 

Sign up for our member email list to get the latest updates.

We appreciate all contributions which allow us to further our mission, Education, Encouragement and Advocacy.

Donate to Adrenal Alternatives Foundation

Sources:


[1] JUNG, C. AND INDER, W. J.

Management of adrenal insufficiency during the stress of medical illness and surgery: Jung, C. and Inder, W. (2008). Management of adrenal insufficiency during the stress of medical illness and surgery. [online] Australasian Medical Publishing Company. Available at: https://www.mja.com.au/journal/2008/188/7/management-adrenal-insufficiency-during-stress-medical-illness-and-surgery .

[2] COLLARD MD, C. D., SAATEE, M.D, S., REIDY, M.D, A. B. AND LIU, M.D, M. M. Perioperative Steroid Management: Approaches Based on Current Evidence: Collard MD, C., Saatee, M.D, S., Reidy, M.D, A. and Liu, M.D, M. (2017). Perioperative Steroid Management: Approaches Based on Current Evidence. [online] Anesthesiology: Trusted Evidence Discovery in Practice. Available at: https://anesthesiology.pubs.asahq.org/article.aspx?articleid=2626031