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

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

Rare Disease Day 2021

Help us Raise Adrenal Disease Awareness on Rare Disease Day 2021

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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!

Rare Disease Day is February 28, 2021

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!!

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!