Blog

Adrenal Advocacy Update: Covid-19 Response Committee

Adrenal Advocacy Covid-19 Response Team Update:

On April, 6, 2021, Adrenal Alternatives Foundation was present in the Covid-19 Response Committee meeting as representatives for adrenal disease in the rare disease congressional caucus.

We presented our Covid Rights Initiative, which is a grass roots movement to empower the disabled population to know their rights regarding caregiver presence during medical situations. Legally, no medical facility can deny a disabled person’s right to a caregiver/patient advocate present, even during the covid pandemic.

Our team presented the following statement:

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.

In the United States, there are legal mandates that state medical centers must follow existing guidelines in 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).  Disabled patients need to be educated that health care facilities are mandated to provide reasonable accommodations for persons with disabilities. These accommodations include the presence of a caregiver/patient advocate during medical events who can provide the patient with necessary support services, including communication with healthcare providers, support managing mental or physical health and other unique medical needs such as assistance with medical devices.

Additionally, we presented the QR code Adrenal Alternatives has created that is a direct link to the mandates and laws that state disabled patients have a right to a caregiver’s presence during medical events. This is a step towards disabled equality and will eliminate the inconsistencies happening within different hospital systems and medical centers. If disabled patients have been told their caregivers cannot be present, they are being denied an American right. The Covid Rights QR code was created so disabled patients have instant access to the DISABLED COVID RIGHTS PDF and can provide it to the medical facility denying them their rights.

You can also access the QR code:https://drive.google.com/…/19p7yvvPr3qky6Ien12G…/view…

We also presented our proposal for expansion on the No Patient Left Alone Act, which was passed in North Carolina.

Our team presented the following proposal:

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.

You can also watch our Adrenal Advocacy Townhall Recording for a detailed explanation of all the legislative initiatives we are supporting. We proudly serve on the COVID19 Response, Healthcare Access and Public Policy Committees in the Rare Disease Congressional Caucus.

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.

Donate to Adrenal Alternatives Foundation

Sign up for our email list to get the latest updates.

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

Know Your Covid Rights!

Know Your Rights!

For disabled patients, having a caregiver present during medical events such as procedures, testing, treatments, doctor appointments and surgeries is an American right, even during the COVID-19 pandemic!

In the United States, there are legal mandates that state medical centers must follow existing guidelines in 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).  North Carolina has recently passed legislation that mandates disabled patients have rights to have a caregiver with them during medical procedures, treatments, doctor appointments and surgeries, even during a pandemic, as stated in the SB 730: No Patient Left Alone Act.

The United States Department of Health and Human Services’ Office for Civil Rights states specifically that hospitals 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.

The Americans with Disabilities Act (ADA) states in Titles II and III that health care facilities are mandated to provide reasonable accommodations for persons with disabilities. These accommodations include the presence of a caregiver/patient advocate during medical events who can provide the patient with necessary support services, including communication with healthcare providers, support managing mental or physical health and other unique medical needs such as assistance with medical devices.

Legally, no medical facility can deny a disabled person’s right to a caregiver/patient advocate present, even during the covid pandemic.

If you have been denied these rights, print the KNOW YOUR RIGHTS pdf and provide it to the medical facility who has denied you.

It’s time we put the humanity back into healthcare.

Sign the Petition

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

SB 730 – No Patient Left Alone Act

https://www.ncmedsoc.org/sb-730-no-patient-left-alone-act/embed/#?secret=Gal47xE1Wm

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.

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

Adrenal Achievements Series- Voice of Silence Musician, Vinoj

Adrenal Achievements Series- Voice of Silence Musician, Vinoj

Adrenal Alternatives Foundation is proud to feature this month’s adrenal achievement article with musician, Vinoj of Voice of Silence music.

Vinoj was diagnosed with Addison’s disease and has recorded a song about his battle with adrenal insufficiency called “Temple to Castle.” We were proud to interview Vinoj about his journey managing adrenal disease and how it has inspired his music.

We are also proud to announce that Vinoj will be headlining our benefit concert hosted at the Alliance for the Arts in Fort Myers, Florida in December of 2021. (Details TBA)

This image has an empty alt attribute; its file name is adrenalachieve.jpg

Vinoj of Voice of Silence – Artist Biography 

Scarborough-based spoken word and hip-hop artist Voice of Silence is well-known for twisting the way  everyday life is perceived with simple yet profound imagery. His style is constantly evolving, just like  himself, and his newfound approach to fuse musical elements from hip-hop and his South Asian  background with his poetic raps creates an experience that cannot be found elsewhere. 

While also working as an artist educator in schools and community programs, Voice of Silence has  performed at countless events, including opening for ¡MAYDAY!’s ‘Fire in the Sky’ tour, UNITY Charity’s  yearly showcases, and the third annual R.I.S.E. Edutainment ‘416RISE’ showcase. He is seven-times  published in various Canadian poetry collections, including Island Magic and The Tracery of Trees, and he  has released his debut poetry/hip-hop album, Befriending Silence, in April 2017. For his integration and  support of the Toronto arts community through his first album, Voice of Silence received the first ever R.I.S.E. Edutainment Community Development Award in 2016. He was also part of the Scarborough Arts  EAST Mixtape Challenge program in 2018, which allowed him to further develop his hip-hop craft through  a collaborative mixtape titled Time Waits for No One. His passion to tap into his full potential and to connect souls one song at a time keeps the ink flowing and  his pen moving. With his new album coming soon, he released a new EP, Roots, which is a three-song  journey of rekindling and redefining his relationship with his creativity. Roots is available now on all music  platforms!

This image has an empty alt attribute; its file name is 123.jpg


Q- Please introduce yourself?
My name is Vinoj, and I was born and raised in Toronto, Canada. By day, I am an engineer, working in rail and transit, and by night, I am an artist educator, a spoken word poet, and a hip-hop recording artist and performer.


Q- What form of adrenal disease were you diagnosed with?
I was diagnosed with primary adrenal insufficiency, more commonly known as Addison’s Disease, in September 2019.


Q- Can you tell us about your song you wrote about your Addison’s diagnosis?
The song “Temple to Castle” was born in the midst of the COVID-19 pandemic, about a year after I started to experience the more severe symptoms of Addison’s pre-diagnosis. I was in a very self-reflective space and was looking back on my journey with Addison’s and how it has impacted my life and shaped me over the past year. As most can relate, I was feeling more alone than before having to be cooped up inside during the lockdown. Poetry and music is my way of expression through which I’m able to connect with others, so I channeled the frustration I felt having these extra obstacles, having to rely on daily medication, and having to work harder to rebuild my physical health into writing this song.

Inspired by Pharoahe Monch’s verse on “The Fight Song”, I wanted to write the intro from the perspective of Addison’s, as if it was a living entity haunting me and wanting to be recognized just like other more common diseases. The following verses were inspired by “TFB” by King Iso, where he treated going to the gym as “training for battle”, and I wrote my verses as building my physical health and motivating myself to continue to fight the symptoms of Addison’s and continue pushing forward. The chorus became an anthem-style battle cry, where I “declare war” on Addison’s and flip the meaning of the phrase “your body is a temple”. I had to make my body a “castle” instead so I can have the physical and mental strength to accept and live with this disease.

I created this song in hopes of connecting with others with similar diagnoses, to show that we are not as alone and rare as health professionals say we are, and to inspire others to not let adrenal diseases hold them back from living their life to the fullest.


Q- Did you struggle to accept your diagnosis of adrenal disease?
Very much indeed. Being 25 at the time, I felt “invincible” and that I will never have to rely on any medications or have any health complications (at least not for a long time), so when I heard about my diagnosis, I wasn’t able to fully take in the gravity of it. It wasn’t until 2 months later, when I had to go back to the hospital because a fever left me completely weak and unable to function that I realized how serious of a condition I have. It probably took me a whole year to finally feel comfortable and accept that I need to live with Addison’s and not against it.


Q- How has adrenal disease changed your life?
Having an adrenal disease has forced me to slow down and listen to my body more. Before all the symptoms and diagnosis, I was always “on the go” and filled up my days from morning until night with things to do. Looking back on this though, I felt that I had spread myself too thin and did not take the time to appreciate the simpler aspects of life. I’m now practicing a lot more self-care through meditation and yoga and learning what my body needs and how the medications affect it as well. Instead of trying to do as much as I can, I am focusing on what matters to me most and what my passions are. Although all of this seemed like a downfall at first and I did feel that I was not being as “productive” as I used to be, I am beginning to appreciate the slower pace and having a more grateful outlook on life.


Q- What goals do you hope to accomplish with your music?
My goal is to connect with others through relatable stories and themes that are captured through my music. I want to capture everyday life in poetic and refreshing ways that allow people to be more aware of themselves and appreciate the immediate world around them.


Q- What is something you wish the world understood about life with adrenal disease?
I wish the world understood that having adrenal disease does not mean we cannot live life to the fullest. I was often told through health professionals and online articles that Addison’s is rare and that it’s even more rare to meet others with it as well, and it’s not easy to regain your physical health, but through the release of “Temple to Castle”, I quickly learned there is a vast international community out there ready to support and inspire each other with their own life stories.


Q- How do you use your music to help you cope with adrenal disease?
Music is very therapeutic to me, as I can spend a whole day just listening to music and being carried away into the world the artists create through their lyrics and instrumentals. It inspires me to tell my own stories in creative ways through music so that I can get lost within the worlds that I create. It is both an outlet that allows me to escape the reality of having Addison’s and at the same time, a tool to allow me to express my journey with it as well. I consider my poems and music to be time capsules that capture what I’m feeling and experiencing in that specific moment, and when I look back at them in the future, it allows me to appreciate how far I’ve come and be inspired by my own experiences.


Q- What is something you wish you could tell all adrenal disease patients?
This disease is not a wall. Although there are some rough days and it feels like a burden, it is just another weight you carry with you on  your shoulder throughout life. It is most definitely possible to live the life you want to while adapting to the routines you now have, so keep pushing onward!


Q- What quote best motivates you?
This quote by Randell Adjei never fails to motivate me: “I am not my struggles, I am not my pain. They are just roadblocks that prove how far I came”

This image has an empty alt attribute; its file name is adrenalachieve.jpg

Vinoj is an example of how you can still accomplish your dreams despite your disease! For more information, you can follow Vinoj at his social media links below-

Website: https://www.voiceofsilencemusic.com/ 

Instagram: http://instagram.com/voiceofsilencemusic

Facebook: https://www.facebook.com/voiceofsilencemusic 

Twitter: https://twitter.com/voiceofsilence_

This image has an empty alt attribute; its file name is cropped-ai-7.jpg

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