Advocacy Update- October 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 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 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.

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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.

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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

Cortisol Injection Instructions QR Code

An adrenal crisis is defined as a life- threatening, medical emergency caused by insufficient levels of the hormone, cortisol. It will lead to death if left untreated and must be quickly addressed with the administration of an emergency cortisol injection. Adrenal patients should always carry an emergency injection and administer it immediately in the event of an adrenal crisis. Patients should also wear an identifying medical alert bracelet that states they are steroid dependent.

Adrenal Alternatives Foundation has created a QR code which can be scanned to instantly access the lifesaving information on how to administer an emergency cortisol injection to treat an adrenal crisis.

How to Scan a QR Code

  1. Open the QR Code reader on your phone.
  2. Hold your device over a QR Code so that it’s clearly visible within your smartphone’s screen. Two things can happen when you correctly hold your smartphone over a QR Code.
    1. The phone automatically scans the code.
    2. On some readers, you have to press a button to snap a picture, not unlike the button on your smartphone camera.
  3. If necessary, press the button. Your smartphone reads the code and navigates to the intended destination, which doesn’t happen instantly. It may take a few seconds on most devices.

Inject Don’t Neglect!

Always administer an emergency cortisol injection in the event of an adrenal crisis.

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.

More information on managing adrenal disease can be found on in the book A patient’s guide to managing adrenal insufficiency.

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

Donate to Adrenal Alternatives Foundation

Announcement! The Future of Cortisol Replacement is here.

Despite its revolutionary success rate, treating cortisol deficiency with the cortisol pumping method has long been a difficult process to obtain. Access to infusion pumps and supplies for non-diabetics and also finding healthcare providers willing to manage adrenal patients on this method are just a few issues that have caused massive barriers to achieve this treatment.

Adrenal Alternatives Foundation is changing that. We are proud to announce our latest resources to help patients safely and successfully start the cortisol pumping method. The following resources were established to aid adrenal patients in their journey to cortisol pumping.

As a collaborative publication containing medical studies, clinical research and documented patient empirical evidence, this book includes everything you need to know about the cortisol pumping method.

Cortisol 101 contains the following information:

Chapter 1: Introduction

What is Adrenal Insufficiency?

Important Terms

What is Cortisol Pumping?

Common Myths

Frequently Asked Questions

Chapter 2: Assessments

Testing

Pre-Pump Planning

Steroid Options

Hydrocortisone Injections

Post Pump Testing

Chapter 3: Starting the Cortisol Pumping Process

Finding a Pump Friendly Physician

Choosing a Pump System

Obtaining Insurance Approval

Chapter 4: Creating a Care Plan

Prescriptions & Items Needed

Choosing a Solu-Cortef Ratio

Setting Basal Rates

Updosing and Sick Rates

Sites and Absorption Factors

Chapter 5: Life with the Pump

Exercise

Showering

Traveling

Intimacy

Surgery Protocols

Chapter 6: Resources

Appeal Letter

Adrenal Alternatives Foundation

Sources

  • Cortisol Pumping Interactive Website. Adrenal Alternatives Foundation is proud to release the website, cortisolpump.org to provide an easily accessible, free resource on cortisol pumping available internationally. Click the link below to access the website.
  • Pumps for Purpose Program.   Adrenal Alternatives Foundation is proud to have partnered with the non profit, CR3 to create a program specific to adrenal disease patients to provide them with affordable pumps and supplies, with or without insurance coverage.
  • Physician Guidance. Our clinical team is proud to guide physicians on the necessary protocols that must be taken to safely and effectively create a care plan for adrenal patients seeking to manage their cortisol deficiency via the cortisol pumping method. Though we are not a replacement for medical care or advice, we are proud to help guide physicians on the proper lab testing and prescriptions needed to begin the cortisol pumping method.

If you need assistance on the cortisol pumping method, please fill out the contact form and we will have a team member contact you to schedule a free consult.

You can also download a One pager on the cortisol pump here.

This content has been brought to you by Adrenal Alternatives Foundation, a 5o1c3 non profit organization. We appreciate all contributions which allow us to further our mission, Education, Advocacy and Awareness for all adrenal disease. EIN: 83-3629121.

Donate to Adrenal Alternatives Foundation