Advocacy

Adrenal Alternatives – What We Are Doing

 

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.

Advocacy

Steroids Save Lives Campaign

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Adrenal patients need steroids just like diabetics need insulin, but awareness on adrenal disease is not as common as awareness on diabetes is.

We’re going to change that.

We’ve lost way too many in the adrenal community due to lack of steroids.
It’s time the truth of adrenal disease was told and this foundation is doing all we can to advocate for all forms of adrenal disease!

We invite you to join us in our social media awareness campaign #SteroidsSaveLives

Upload your awareness photos to social media and use the hashtag #SteroidsSaveLives to help us raise awareness that steroid medications are necessary for life in those with adrenal insufficiency!

We are going to END steroid shaming.

We are going to spread the message that steroids are necessary for adrenal patients to live.

No one should feel guilt for being on medications that keep them alive. 

STEROIDS SAVE LIVES! 


Tag @AdrenalAlternatives on instagram or
@AdrenalAdvocate on twitter. 


It’s time the truth of adrenal disease was told!

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Advocacy

What is the Cortisol Pump?

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What is the cortisol pump?

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.

Professor Hindmarsh, of CAHISUS is a pioneer for this life changing treatment.

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.

It is a difficult process but it IS POSSIBLE!  For more information please read our article on HOW TO GET ON THE CORTISOL PUMP.

If you feel you could benefit from the cortisol pump, speak with your endocrinologist but be prepared to hear “NO.”

Don’t lose heart!

There are doctors in the USA who will manage this treatment and we hope to continue raising awareness so that one day it will be as available to adrenal patients as it is to diabetics.

We’re here to lead all adrenal patients to every adrenal alternative!

 

 

 

 

 

Advocacy

HOW TO GET ON THE CORTISOL PUMP

 

 

HOW TO GET ON THE CORTISOL PUMP-

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?

If you are unsure, here is a link to Understanding Adrenal Disease

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)

http://www.cahisus.co.uk/pdf/CIRCADIAN%20RHYTHM%20DOSING.pdf

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.

 

Advocacy

Understand your Adrenals Series

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.

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The videos are posted below-

Episode 1- What do the Adrenals do?

Episode 2- Adrenal Fatigue VS Adrenal Insufficiency

Episode 3-  Types of Adrenal Diseases/Problems

Episode 4- Keeping your Adrenals Healthy

Advocacy

Guilty!

I am sick.

I have an invisible illness.

I have chronic pain.

AND

I have guilt for it.

WHY?!?!?!

Everything that I have to go through on a daily basis, isn’t fun.

Most days I am in so much pain, I don’t even know if I will be able to walk at all.

Most days I am tired, but I still have to function.

It messes with my thought process and I can’t even recognize things or voice what I need, because my brain just can’t process the words I need. Yet, I feel guilty over having to cancel plans, or opt out of things my friends are doing, and even having to have my kids stay inside and play video games (which they do love) because I can’t do anything.
My diet change (whole food plant based) has helped quite a bit. It helps manage some of the fibro pain, but more symptoms have presented and I just don’t know what to do.

I took my oldest son to his orientation and I can’t tell you how painful that was. I was so exhausted, in so much pain, but I had to push through it. It took me a couple days to feel some what normal again, but I felt so guilty for being in pain and for being tired. I didn’t want him to be embarrassed because his mom looked like shit. I know in my heart that he doesn’t care. He loves me and he enjoyed me being there, but for some reason…. I feel guilty.
I can’t be the wife or mother my kids need… Let me rephrase that… I can’t be the wife or mother I think my family deserves.

They feel loved, they are happy, but I feel guilty because I can still remember the mom I used to be. The healthy mom who did EVERYTHING.

I am working on this, but it is hard. This disease pulls me into the worst depression and destroys the person I am working hard to be. It would be easier If I knew there was an end to this pain. It would be easier if I knew what days I would struggle and what days would be good. I have better odd betting in Vegas than I do on my disease.
Guilt eats at me everyday but I need to stop listening to my inner voice and listen to my family and friends. They love me, they don’t care if I miss events or bail on them, they constantly reassure me that they are always here for anything I need. Those words should drown out the negative words in my inner thoughts, but I am in my head way to much.

I want to try to work on this. I hope that you all can too.

Don’t let your inner voice be bigger than the ones who are encouraging and loving.

Lean on your loved ones, let them know how you feel, so their words will overshadow yours.

No more guilt.

-Adrenal Alternatives Contributor, Chronic Mom

 

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Advocacy

Recently passed California bill harmful to pediatric adrenal disease sufferers

 

The SCR- 110 Sex Characteristics Bill is a bill California presented that was amended in the Senate on May 9 2018.

The context of the bill is coming from the wake of the gender queer and transgender issue. This bill prevents parents from making a decision on whether a child should be deemed male or female In those born with ambiguous genitalia.

Where this is concerning is there are genetic deformities and congenital diseases that are negatively impacted by this bill.

In these specific cases, this bill negatively impacts children born with diseases such as congenital adrenal hyperplasia. CAH is a life threatening disease which can cause children to be born with ambiguous genitalia, hormonal issues and requires life long steroid cortisol replacement medications.

Most pediatric endocrinologists agree that when CAH causes genetic abnormalities or genital mutation, these cases require medical intervention.

The danger of this bill is that these children will not receive the care that they need because of laws passed by politicians NOT educated informed physicians regarding medical care.

The concerning part is when decisions of parents and physicians are taken away by legislators who have no education regarding the dangers of improper medical treatment with diseases such as CAH.

It is understood, the concept of not wanting to cause someone to have gender dysphoria or to be forced to choose a gender; but in this case these specific medical issues need to be addressed.

This bill takes autonomy away from parents and physicians to make that choice.

Children, especially females born with CAH typically have ambiguous genitalia that needs to be corrected. These children can also suffer from hormonal issues such as polycystic ovarian syndrome.

This bill will inhibit the proper care of these children.

The treatment of CAH has nothing to do with gender identification.

Bills like this take the power of medical decisions out of parent’s and medical professional’s hands.

Below is a brief excerpt of the bill so you can fully understand the context.

This bill was amended by Senator Wiener, and is as follows-

This measure among other things called upon stakeholders in the health professions to protect children born with variations of sex characteristics.

Whereas between 1% and 2% of individuals born with variations of sex characteristics; which may include differences in genital anatomy from a hormonal variations or internal reproductive structure: Whereas intersex refers to the rare variety of physical indicators that indicate the differences which occur about the same frequency as do green eyes.

Whereas the majority of babies born with these variations are healthy and do not require medical or other interventions related to sex characteristics until puberty.

Beginning in the 1950’s physicians in the United States began performing irreversible surgery on intersex infants without medical justification and attempt to surgically or hormonally force them to conform to what the  physician perceived as a typical male and female body.

Source- https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=201720180SCR110

So what can we do about it?

The Judiciary Committee phone number is (916) 319-2334.

It is imperative that we have representation from patients, family members and medical professionals to stop this bill.

This is not an attack on the gender-queer or transgender population, this is a protection for children born with a serious, life threatening, incurable disease.

 

This bill states- “California should serve as a model of competent and ethical medical care and has a compelling interest in protecting the physical and psychological well-being of minors.”

 

If that be the case, I urge Senator Wiener, Senator Glazer and Assembly Member Limón to reconsider this bill and amend it to protect children with CAH.

Please call and request an amendment to the SCR-110 Sex Characteristics Bill in favor of children born with CAH.