We are a patient empowerment organization that encourages, educates and advocates for sufferers of all adrenal diseases.
Our first mission is to align patients with the proper tools they need to live the best quality of life with this disease. We were founded to connect people in the United States to the resources needed to begin treatment with the cortisol pump. We also work to refer patients to all possible options to help manage adrenal disease. This includes naturopathic practitioners, mental health counseling services, fitness instructors, physical therapists, dieticians, medical professionals, caregivers, other adrenal patient networks and resources.
Secondly, we seek to educate the medical community on the truth of adrenal disease. We teach educational seminars to caregivers, EMTs, paramedics and nursing students through our Adrenal Awareness Initiative.
Thirdly, we seek to encourage the adrenal community with our care package program, where we provide adrenal patients with comforting products and supplies as well as encouraging and educational resources to improve their lives as they fight this devastating disease.
Fourthly, we are actively working to change legislation that all counties in the United States are authorized to administer the life-saving Solu-Cortef injection, which is not currently the case. Not all EMT’s are allowed to give this life saving medication and most ambulances do not have it on board. We are working to change this on a local, state and federal level. We have aligned with organizations such as CIAAG- Chronic Illness Advocacy and Awareness Group and Adrenal Insufficiency Protocols who actively work to legislate for patient rights. Our fifth project is our upcoming Pumps for Purpose program, where we take donated insulin pumps and supplies and repurpose them to adrenal disease patients actively working with endocrinologists to maintain a better quality of life via the cortisol infusion pump.
Lastly, we are working on creating clinical trials and research to create more technology to manage adrenal disease. Unlike diabetics, there is currently no meter to check our blood levels. Adrenal patients must be constantly vigilant of their cortisol levels, which can drop in an instant. Research and technology advances are desperately needed.
Basically, the cortisol pump is a repurposed insulin pump that delivers solu-cortef instead of insulin.
The use of solu-cortef (injectable version of cortisol when mixed with saline) is placed in an insulin pump that is programmed to disperse cortisol according to circadian rhythm dosing by programming rates of basal delivery into the pump. The pump also has options to bolus for stress dosing.
This helps adrenal patients maintain better control of their cortisol levels by allowing them to get cortisol quicker instead of waiting until steroid pills metabolize through the stomach and finally enter the bloodstream.
This therapy bypasses the gastric system and is able to deliver cortisol in a more consistent way. With a pump, an adrenal insufficient patient can receive a constant supply of cortisol and will not suffer the ups and downs with oral cortisol replacement tablets. They are able to sleep through the night without having to wake up to take steroid pills.
This can be of great benefit to adrenal patients who are hypermetabolizers of cortisol. Some patients have to take medications more frequently than others due to their body’s high cortisol clearance rate. The pump is a great asset to these patients because they are no longer forced to take pills every couple of hours around the clock.
Side effects due to mal-absorption can be decreased and patients have been reported to have improved sleep, weight management, gastric issues and experience an overall improvement in their energy levels and sense of well-being as opposed to taking steroid tablets.
For more information on the medical information visit his website-http://www.cahisus.co.uk/pdf/USING%20THE%20PUMP%20METHOD%20IN%20ADDISON%27S.pdf
The pump is not a cure for adrenal disease and is difficult to obtain. This treatment is relatively an unknown in the United States and this foundation is actively working to raise awareness on this alternative treatment to managing adrenal insufficiency.
Step 1- Assess your life, health and disease management.
The cortisol pump is not a cure for adrenal insufficiency and is not a treatment that is right for everyone. If you are well managed on the steroid replacement pills, the adrenal pump is excess money and effort you may not need.
The pump is NOT an easy thing to acquire and the fight to get one takes a great deal of trouble, mental stamina and resources.
You need to consider whether this is something you actually need or not.
Here is a link to a wonderful post about 5 reasons NOT to get a cortisol pump by a lovely woman who has adrenal insufficiency and is on the pump. Reasons NOT to Get a Cortisol Pump
That being said, If you are struggling with your quality of life this treatment may help you.
Step 2- Research, Learn and Educate for yourself!
Adrenal insufficiency is a rare disease not widely understood in the medical community. You need to become an expert on your own health, especially if you are attempting to get on the pump.
Most doctors barely know anything about adrenal disease. They have been taught that replacement therapy with pills is the only treatment and that patients live a normal life with this disease.
Nothing could be further from the truth.
You need to understand your specific health concerns.
Information you need to know-
What is your diagnosis? Do you have primary Addison’s disease, secondary adrenal insufficiency, tertiary adrenal insufficiency or congenital adrenal hyperplasia?
What is your quality of life? Are you able to work, drive, do housework or function normally?
What have you tried to manage your adrenal disease?
Typically an endocrinologist will not even consider the pump until you have tried EVERY oral steroid possible.
What is your current daily dose of replacement steroid?
How much are you stress dosing?
What other medical issues do you have?
Are you able to afford the supplies and medication needed for the pump? Insurance does not typically cover “off label” treatments.
This disease is expensive and life threatening if left untreated. If you have A.I you HAVE to have some sort of steroid replacement to stay alive.
Just educate yourself on everything you need to know. You will have to present YOUR case to an endocrinologist to get the cortisol pump. Which brings us to the next point.
Step 3- Finding An Endocrinologist
This will be a difficult part of your journey to the pump. Finding an endocrinologist that understands adrenal insufficiency is a needle in a haystack and then finding one who will be brave enough to attempt guiding you through pump therapy just adds to the challenge.
Prepare the best case possible. Send your research, your health information, everything you can to the endocrinologist BEFORE your appointment so they are aware of your intentions before hand. Write a letter to the endocrinologist explaining diagnosis, failed treatments and desire to be on the pump.
You will have to fight to find a doctor willing to write the script for the pump. It will take effort, lots of research and a mental stamina.
Step 4- Battling the Insurance Company
Adrenal Insufficiency is documented to be treated by oral steroids and not by the insulin pump. Be prepared to be on the phone for hours and be told incorrect information. Just be aware that you will have to tell the same story to a different agent over and over and over again. Don’t give up.
Step 5- Getting A Pump & Supplies
If your insurance cooperates and provides you with a pump and supplies, GREAT! But I’m pretty sure with A.I it won’t be that easy.
Take heart, there are other options.
There are many ways to obtain a pump and supplies: Diabetic Barter Sites, Facebook Groups, Craigslist and Ebay.
The internet is a plethora of connectivity. You can find what you need, you just have to put in the effort to look.
Step 6- Waiting for the Pump
If you are not doing well on pills, switching to subcutaneous injections of solu-cortef may be an option while you are waiting.
To figure out your dose, You need to convert it from oral milligrams to liquid solu-cortef.
2 units= 1mg if you are doing a 2:1 ratio with actovials of solucortef.
You can also run a 1:1 ratio with 1ML of saline per 100mg of solucortef powder vials.
You also need to dose according to the circadian rhythm percentages.
Circadian dosing method example-
6am and 12 noon 40%
12 and 6pm 20 %
6pm to Midnight 10-15%
Midnight and 6am 25-35%
Source for the dosing is based on Professor Hindmarsh’s research (link posted below)
Use solu cortef solution and inject with insulin needles.
The standard recommendation is to have lab testing to see how quickly you absorb and “use” the cortisol in your body.
You can have cortisol clearance testing done but it is not typically covered by insurance. It is beneficial to creating proper rates for your specific needs. A pump is only as good as the information programmed into it.
Step 7- Staying Sane
The process to get on the pump is long, obnoxious and detailed. No one should have to fight for years to get better quality of life. The healthcare system is broken and changes need to made. This stands for all diseases and treatments, not just adrenal disease.
Everyone should have access to a better life.
Take heart friends, Our voices will be heard.
This foundation is dedicated to adrenal disease advocacy.
One of the main goals of this Foundation is to bring awareness to Adrenal Disease.
We are pleased to announce we have collaborated with the healthcare education site- ZUBIA ( https://zubialive.com/ ) to teach a 4 part webinar series designed to educate the world on the adrenals, what they do and bring awareness to adrenal issues.
The videos are posted below-
Episode 1- What do the Adrenals do?
Episode 2- Adrenal Fatigue VS Adrenal Insufficiency