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COVID has taken the Humanity out of Healthcare! Expand the SB 730- No Patient Left Alone Act

Adrenal Alternatives Foundation is an active representative in the Rare Disease Legislative Caucus, where we are a voice for all adrenal disease patients. We are currently proposing the expansion of the No Patient Left Alone Act, originally passed in North Carolina.

Legislative 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.

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.

Many current COVID restrictions are crossing moral grounds in many cases, which there are thousands of patient testimonials to support. In patients with continuous ongoing treatments such as dialysis, chemotherapy and IV infusion medications, they are now forced to be alone during these already difficult treatment sessions, therefore increasing the suffering and adding potential mental health implications, which then can adversely impact their overall health and wellbeing. The increased potential for patient endangerment and medical errors in patients with rare disease protocols without caregivers and advocates present, should be of great concern not only to patients and caregivers, but to medical professionals as well. Facilities, hospitals and treatment centers are citing covid as the rationalization behind restricting visitor access and 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 communication support, behavior support, and support managing anxiety and other unique needs. There are several federal disability civil rights laws that can apply to hospitals – 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, and 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 Covid19 restrictions as the reasoning. The ADA, RA, and ACA are not suspended during 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.

PLEASE SIGN THE PETITION TO SUPPORT THE EXPANSION OF SB730
sponsored by the Adrenal Alternatives Foundation a 501(c)3 nonprofit patient advocacy organization.

https://forms.gle/NqXGrctVqun3tf1T8

RESEARCH & SUPPORTING ARTICLES

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

https://www.jdsupra.com/legalnews/hospital-covid-19-visitor-restrictions-34397/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4852166/

https://clinicaltrials.gov/ct2/show/NCT04341519

https://www.adacovid19.org/index

https://www.journalofhospitalmedicine.com/jhospmed/article/226748/hospital-medicine/suffer-alone-hospital-visitation-policies-during-covid-19

https://www.npr.org/2020/05/17/857531789/federal-government-asked-to-tell-hospitals-modify-visit-bans

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.

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

Donate to Adrenal Alternatives Foundation

The Cortisol Pump Saved my Life- Lauren’s Story

Adrenal Alternatives Foundation’s main mission is to provide access and education to “adrenal alternatives” for those who suffer from cortisol deficiency.

For some patients, oral steroid medications are not adequate enough to maintain quality of life, therefore, alternative cortisol replacement methods are a life saving intervention.

Below is an interview with Lauren, a cortisol pumper whose life was saved because of the cortisol pumping method!

Q-Please introduce yourself?

A- Hi, my name is Lauren Michelle and I am 23 years old. I’m a former ballerina turned chemist turned full time chronically ill patient. I am nearly done with my Bachelors of Science in Chemistry, started up at Northern Arizona University, but because of illness I have had to move back home and am finishing the degree at Arizona State University. Currently though I am on medical leave and training my German Shepherd puppy Nova to be my service dog.

Q-What country do you live in?

A- The United States of America. Specifically  the state of Arizona.

Q-What form of adrenal disease were you diagnosed with?

A- At the beginning of 2020 I was diagnosed with Adrenal Insufficiency at the hospital after an acute adrenal crisis. I had zero basal cortisol that they could detect, and then the stim test came back as 0.55 cortisol. Later in the year I was diagnosed as Addisons with further testing and more symptoms showing up.   

Q-Can you tell us about your pump that helps you manage your adrenal disease?

A- Before getting on the pump, we tried EVERYTHING to manage my Addisons. The hydrocortisone oral tablets, a liquid formulation specifically compounded for me, and even IV solu cortef. I have malabsorption of my small intestine, and also suffer from MCAS including a lot of idiopathic anaphylaxis. For about 6 months I was in a cycle of anaphylaxis and adrenal crisis due to flare ups because of inconsistent cortisol levels and absorption. Since being on the pump I have been able to stay on maintenance replacement dosing for the first time since being diagnosed. I can micro titrate the amount of hydrocortisone that I need when I feel low, and I don’t have to sit there guessing how much steroid I need with the pills or liquid formulation. Sometimes I only need 1 mg more to get my body back on track, whereas before the pump that was NOT an option.

Q-What made you decide to get on the cortisol pump?

A- I realised I wasn’t absorbing pills when hospitalized for most of the month of June 2020. The doctors helped me to transition to liquid hydrocortisone. This bought me some time before my stomach completely stopped working. I started to have to give more of the liquid to just remain stable and out of crisis. When I heard about the pump I knew I needed to be on it, as I was not stable at all on anything else we had tried.

Q- Was your doctor supportive of your decision to start pumping?

A- I had to see a different endocrinologist than my main one, as she had never done cortisol pumping but was fully supportive of the idea for me. Once I found an endocrinologist who knew how to program and monitor cortisol pumping than the one I was seeing, both endocrinologists and all of my other specialists, specifically my allergist and immunologists, were very supportive of the pump. One of my doctors literally told me they thought I was going to die last year because of how poorly my body was responding to other forms of treatment. I can say with confidence that I felt the same way. I couldn’t stop crying tears of relief and joy once I got on the pump. 

Q- Did your insurance cover your pump and supplies?

A- I am one of the fortunate ones where my insurance has covered my Medtronic and supplies. I think this is because I had been hospitalized almost every month in 2020, that or in the ED to treat an adrenal crisis. Literally anything to keep me out of the hospital. 

Q- What is something you wish you could tell all adrenal disease patients?

A- Something one of my favorite ED nurses told me when I was first diagnosed was that during her first year of diagnosis (she also has adrenal insufficiency) she thought she was going to die, but once she figured out what worked best for her body she has been fine ever since. I am thankful she told me that. I wish someone had told me that adrenal insufficiency treatment isn’t one size fits all. That you are going to feel overwhelmed. That steroids will make you gain weight. That this will be one of the hardest diseases for you to manage throughout your lifetime. But you WILL be able to manage it. To trust yourself, as the longer you live with the disease (or knowledge that you have the disease), the better you are going to know your own body and what to do to keep it functioning. No one is going to fully understand what you are going through, especially because it is a rare disease. Don’t be afraid to advocate for your health needs, and be sure to keep a log of symptoms and dosing.

Q-How has adrenal disease changed your life?

A- In a very strange way it has brought me so much closer to my family and specifically my mom. We were never the closest growing up but when I was diagnosed she essentially became my caregiver. I treasure this relationship so much. I have faced a lot of life or death situations in the past 4 years leading up to the diagnosis, so my perspective on what is important in life changed drastically. Before, I was so career driven and independent, but now I see that school will always be there and it doesn’t actually matter how long it takes to get through it. I learned quickly that the friends who are true friends and love you will be there for you no matter what, but I have lost a significant amount of friends due to having to deal with my own health. Overall I have been incredibly humbled and grateful since diagnosis, and have so much more empathy for others.

Q-Do you think the cortisol pump has improved your life?

A- 2020 I was so so sick, all of the time. Since getting on the pump I have finally begun healing. My doctors believe that I never had a consistent amount of cortisol in my body until I got on the pump, so I spent last year fighting for my life often because of malabsorption issues. Since starting the pump I finally have a basal cortisol level, making it possible to tackle a lot of my other health issues. If it were not for the pump I do not think I would be here today.

Q-What is a quote that you live by?

34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. – Matthew 6:34 
 9 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go. – Joshua 1:9

You can follow Lauren’s journey on her instagram or tiktok at the handle: @cortisol.queen

For more information on cortisol pumping visit the links below.

Podcast- Everything you need to know about Cortisol Pumping-https://anchor.fm/adrenal-alternatives-foundation/episodes/The-Cortisol-Pump–Everything-you-need-to-know-e7otis/a-at1ej4


Guide to the Cortisol Pump-https://drive.google.com/file/d/13BYRCaXSslDECc3bEuu15aWaN2yxx9fM/view

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.

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

Donate to Adrenal Alternatives Foundation

Myths about the Cortisol Pump


Myth #1 “It is not available.”

The cortisol pumping method is a relatively unknown alternative treatment for adrenal insufficiency. Most doctors have never heard of it, but that does not mean it is not available. The use of infusion pumps to deliver medication is a common practice, mainly in the management of diabetes. However, the use of cortisol in infusion pumps is considered “off label” use. Cortisol pumping is available wherever infusion pumps are available. All you need is a doctor willing to manage your care, which involves he or she writing a prescription for an infusion pump, supplies and solu-cortef. Adrenal Alternatives Foundation works with patients internationally with cortisol pumping advocacy and we educate healthcare professionals all over the world on how to safely and effectively start the cortisol pumping method. We also work alongside other organizations to repurpose pumps and supplies to adrenal patients with our Pumps for Purpose program. Cortisol pumping is available internationally, wherever infusion pumps are available.

Myth #2 “It isn’t safe.”

Research has shown that cortisol pumping is an effective alternative treatment to oral steroids for the management of cortisol deficiency. We have compiled a comprehensive list of evidence showing that this method is safe.

A recent poll done by Adrenal Alternatives Foundation revealed that 97% of the patients surveyed stated that cortisol pumping improved their quality of life.

Adrenal insufficiency requires adequate cortisol replacement in the form of steroid medications. With the cortisol pumping method, patients can bypass the gastric pathway and absorb their life-sustaining medication better. This treatment is revolutionary for hypermetabolizers and for those with gastro-intestinal problems or malabsorption issues. The cortisol pumping method truly puts adrenal patients in control of their cortisol distribution in a way that steroid pills cannot. In situations of physical or emotional stress where “updosing” is needed, the pump can immediately administer a bolus, which is extra cortisol administered through the pump canula at the amount you select. Instead of having to wait for pills to metabolize, the cortisol can be absorbed faster and can help prevent adrenal crisis. Cortisol pumping is not a cure for adrenal insufficiency and is not a treatment that is right for everyone. If you are well managed on steroid replacement pills, being on the pump method may not be necessary to achieve quality of life.

Myth #3 “My insurance won’t cover it”

What your insurance will cover is completely dependent on your specific coverage plan and insurance company. If you are denied, you can always file an appeal. Visit this link to download the example appeal letter you can fill out with your information to appeal your insurance company’s denial.

Our foundation team also assists patients file insurance appeals has successfully battled countless insurance companies across the nation and can assist you in your fight for coverage.

It is also an option to cash purchase a pump and supplies specifically from companies such as Omnipod and Medtronic if you have a prescription from your overseeing physician.

Adrenal Alternatives Foundation has also aligned with the organization CR3 to help adrenal patients acquire pumps in a safe and legal manner. Visit this link to apply for pump assistance.

Myth #4 “My doctor said no.”

Finding a healthcare professional willing to work with this relatively unknown treatment option can be a challenge. You may have to “query” multiple physicians before you find one willing to manage your care on the cortisol pumping method.

In order to achieve this, it is best to prepare a compelling case and provide it to the physician before your appointment. Send research on the cortisol pumping method and your health records to the physician before your appointment so they are aware of your intentions before hand. We have created a pump proposal letter you can fill out with your information, explaining your diagnosis, failed treatments and desire to be on the pump. The doctor may or may not be receptive to your request and alerting them of your intentions beforehand may save you time, money and effort. Again, you may have to contact multiple physicians before finding one who is willing to manage the cortisol pumping method.

Our clinical team is also willing to speak with your current physician and provide them with guidelines on how to safely start the pumping method. If you would like our assistance, fill out our contact form and request a cortisol pumping consult.

Myth #5 “It isn’t legal.”

FDA approval is not necessary to safely and legally begin cortisol pumping under the care of a licensed physician. Use of the infusion pump for adrenal insufficiency is considered an “off label” treatment. Infusion pumps have long been approved for the administration of medications.

According to the Department of Health and Human Services Centers for Medicare and Medicaid Services Medicare Coverage Issues Manual Section 60-14 A: “6. Other uses of external infusion pumps are covered if the contractor’s medical staff verifies the appropriateness of the therapy and of the prescribed pump for the individual patient.”

In addition, according to the recently passed Right to Try Act, patients have legal rights to access to life-saving treatments which are not yet FDA approved.  

More information on cortisol pumping can be found on the cortisol pump advocacy tab on our website and also in the book A patient’s guide to managing adrenal insufficiency.

You can also listen to our podcast episode Everything you need to know about the Cortisol Pump! or download our Guide to the Cortisol Pump.

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.

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

Donate to Adrenal Alternatives Foundation

Healthy Motion Series

For some patients with adrenal disease, exercise can feel like an impossible task.  It can be hard to exercise and sometimes even taking a shower feels like climbing a mountain. But even though we may not be able to run marathons, it is important to keep our bodies moving even if it is at a slow pace.

Progress is progress, at any speed!

Adrenal Alternatives Foundation is proud to feature board member and movement recovery specialist, Richard as he shows us some healthy movements appropriate for those with chronic health issues and disabilities.

Below is a collection of videos featuring our Healthy Motion Series where we show you easy healthy movements that you can safely do at your own pace!

Healthy Motion Series.

Copyright: Adrenal Alternatives Foundation 2021

*This content was created for educational purposes only and is not to be used to treat or manage any condition. Do not perform any physical activity without first checking with your healthcare provider*

Adrenal Alternatives Foundation 501c3 non profit Education, Advocacy and Encouragement for all adrenal disease.

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

Donate to Adrenal Alternatives Foundation

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.

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