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.

Donate to Adrenal Alternatives Foundation

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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.

What is the difference between blood, urine and saliva cortisol testing?

What is the difference between blood, urine and saliva cortisol testing?

*This information is to be used for educational purposes only and is not intended to provide medical care or advice*

There are three forms of cortisol in the body:

1.Free cortisol

2.Bound cortisol

3.Cortisol metabolites

Bound Cortisol– Cortisol which is attached to a specific protein (CBG) is known as a bound cortisol. Metabolized cortisol evaluates how much cortisol is being made in total and cleared through the liver.

Free Cortisol- Cortisol which is not attached to any protein known as free cortisol. Free cortisol reveals how much cortisol is free to bind to receptors and allows for assessment of the circadian rhythm.

Cortisol metabolites– Metabolites of cortisol gives insight into the relative activity of 11b-HSD types I and II, which controls the activation and inactivation (to cortisone) of cortisol.

Approximately 90% of cortisol is bound to cortisol-binding globulin (CBG), also known as transcortin, and albumin.  Transcortin: corticosteroid-binding globulin (CBG) or serpin A6, is a protein encoded by the SERPINA6 gene and is an alpha-globulin. Albumin: main protein in your blood and carries substances such as hormones, vitamins, and enzymes throughout the body.

5% of circulating cortisol is free (unbound). Only free cortisol can access the enzyme transporters in the liver, kidney, and other tissues that mediate metabolic and excretory clearance.

Cortisol-binding globulin (CBG) has a low capacity and high affinity for cortisol, whereas albumin has a high capacity and low affinity for binding cortisol. Variations in CBG and serum albumin due to renal or liver disease may have a major impact on free cortisol.

Standard Ranges for Cortisol:

A normal adult range for cortisol levels in urine is between 3.5 and 45 micrograms per 24 hours.

Reference ranges for salivary cortisol assay: <0.4–3.6 nmol/L at 2300 h & 4.7–32.0 nmol/L at 0700 h.

Standard 8 a.m. range for blood serum cortisol is between 6 and 23 micrograms per deciliter (mcg/dL)

Measuring both free and bound cortisol levels allows for insight into the rate of cortisol clearance/metabolism and clearance.

Urine and saliva cortisol testing are used to evaluate free cortisol levels. Morning saliva cortisol panels are done to measure the diurnal cortisol curve. Blood cortisol testing is used to evaluate total cortisol and also bound cortisol.

In patients with adrenal insufficiency, an evaluation of cortisol tested via blood, saliva and urine can all be beneficial in evaluating the efficacy of their cortisol replacement medication(s). Recommended protocols are a comparative assay of cortisol levels from urine, blood and saliva specimens. The patient’s quality of life, symptomatic complaints and also fatigue levels should also be used when evaluating a proper cortisol dosing regimen.

Sources:

Abraham, S. B., Rubino, D., Sinaii, N., Ramsey, S., & Nieman, L. K. (2013). Cortisol, obesity and the metabolic syndrome: A cross-sectional study of obese subjects and review of the literature. Obesity (Silver Spring), 21(1), 1-24. doi:10.1002/oby.20083

Dhillo WS, Kong WM, Le Roux CW, Alaghband-Zadeh J, Jones J, Carter G, Mendoza N, Meeran K and O’Shea D. Cortisol-binding globulin is important in the interpretation of dynamic tests of the hypothalamic-pituitary-adrenal axis. Euro J Endo. 2002;146

Hoshiro, M., Ohno, Y., Masaki, H., Iwase, H., & Aoki, N. (2006). Comprehensive Study of Urinary Cortisol Metabolites in Hyperthyroid and Hypothyroid Patients. Clinical Endocrinology, 64, 37-45. doi:10.1111/j.1365-2265.2005.02412.x

Taniyama, M., Honma, K., & Ban, Y. (1993). Urinary Cortisol Metabolites in the Assessment of peripheral Thyroid Hormone Action for Diagnosis of Resistance to Thyroid Hormone. Thyroid, 3, 229-233.

Tomlinson, J. W., Finney, J., Hughes, B. A., Hughes, S. V., & Stewart, P. M. (June 2008). Reducing Glucocorticoid Production Rate, Decreased 5alpha-Reductase Activity, and Adipose Tissue Insulin Sensitization After Weight Loss. Diabetes, 57, 1536-1543.

Bancos I, Erickson D, Bryant S, et al: Performance of free versus total cortisol following cosyntropin stimulation testing in an outpatient setting. Endocr Pract 2015 Dec;21(12):1353-1363 doi: 10.4158/EP15820

Petersen KE: ACTH in normal children and children with pituitary and adrenal diseases. I. Measurement in plasma by radioimmunoassay-basal values. Acta Paediatr Scand 1981;70:341-345

Hamrahian AH, Oseni TS, Arafah BM: Measurements of serum free cortisol in critically ill patients. N Engl J Med 2004;350;16:1629-1638

Ho JT, Al-Musalhi H, Chapman MJ, et al: Septic shock and sepsis: a comparison of total and free plasma cortisol levels. J Clin Endocrinol Metab 2006;91:105-114

le Roux CW, Chapman GA, Kong WM, et al: Free cortisol index is better than serum total cortisol in determining hypothalamic-pituitary-adrenal status in patients undergoing surgery. J Clin Endocrinol Metab 2003;88:2045-2048

Huang W, Kalhorn TF, Baillie M, et al: Determination of free and total cortisol in plasma and urine by liquid chromatography-tandem mass spectrometry. Ther Drug Monit 2007;29(2):215-224

Mayo Clinic Laboratories-  https://www.mayocliniclabs.com/test-catalog/Clinical+and+Interpretive/65484

The Adrenal Alternatives Foundation is registered with the IRS as a 501(c)3 nonprofit organization.

EIN: 83-3629121.

Donate to Adrenal Alternatives Foundation

Celebrating Rare Disease Day 2020

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Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.

For #RareDiseaseDay we invite you to join us with the
AI Butterfly Challenge, where we are raising our hands for adrenal disease awareness.

Our objective is to flood social media (pinterest, instagram, facebook and twitter) with our butterfly photos to spread awareness on ALL ADRENAL DISEASES!

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Rare Disease Day is February 29, 2020

To participate- Take a photo with your hands in the shape of a butterfly and upload to social media using the hashtags #RareDiseaseDay and #AIButterfly!

You can edit your photo with the template download here!!

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Or, if you’d like us to edit your awareness photo send your photo to adrenalalternatives@gmail.com

 

We hope you join us in raising awareness for all adrenal disease!

Can you donate blood with adrenal disease?

Donating blood is one of the most selfless acts a person can do, but when you have a life-threatening illness such as adrenal insufficiency, there are questions as to whether you are allowed to donate blood or not.

Can adrenal disease patients donate blood?

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The answer is complicated.

Some countries/territories allow blood donation from adrenal patients and others do not. It is ultimately dependent on the regional medical director’s decision of a particular organization.

According to the Pituitary Foundation, Addison’s disease is listed as a permanent deferral which means those with this diagnosis are permanently banned from donating blood.

The Joint United Kingdom (UK) Blood Transfusion and Tissue Transplantation Services Professional Advisory Committee states that anyone diagnosed with any form of adrenal failure “Must not donate.” 
When we searched the American Red Cross website for adrenal disease information, we found no search results that pertained to whether adrenal patients could donate or not.
You can review the full eligibility requirements here.
To answer, the original question, Can you give blood with adrenal disease?
It depends on where you live and what organization is accepting blood donations.
If you are eligible to donate in your area, remember it is also a personal choice.  You should discuss it with your doctor to determine your risks and benefits of blood donation. 

 

 

 

 

 

Sources:

https://www.mskcc.org/about/get-involved/donating-blood/additional-donor-requirements/medical-conditions-affecting-donation

https://www.pituitary.org.uk/information/living-with-a-pituitary-condition/donating-blood/

https://www.redcrossblood.org/donate-blood/how-to-donate/eligibility-requirements/eligibility-criteria-alphabetical.html

https://www.transfusionguidelines.org/dsg/wb/guidelines/ad003-adrenal-failure