It started on a Zoom call during May 2020 at the height of the COVID-19 pandemic. Adriana from our partner organisation Associação Brasileira Addisoniana (ABA) in Brazil spoke of the people they supported not having sufficient steroid medication and emergency injection kits. The Adrenal Causes Together (ACT) Panel knew we had to do all we could to support ABA's campaign.
Thanks to an open letter to Endocrinologists and medical authorities in Brazil from the Adrenal Causes Together (ACT) Panel and the sheer determination of Associação Brasileira Addisoniana (ABA), emergency injection kits are now being provided in Brazil! A breakthrough in showing what can be achieved when we collaborate and support one another globally and a relief for all to know the adrenal insufficiency community in Brazil are now able to self-administer an emergency hydrocortisone injection. This approach is a huge step in preventing hospital admissions and deaths from adrenal crisis, especially during COVID-19 where there is a higher risks of complications.
To receive an emergency hydrocortisone injection kit and training on how to administer the injection, healthcare professionals in Brazil refer their patients to ABA to organise a kit as part of their clinical approach. This highlights the vital role patient support groups play in supporting clinical practise. Without ABA and their unwavering commitment to improve patient care for the adrenal insufficiency community in Brazil, these vital safety measures wouldn't exist. So what's next for ABA? Campaigning to have sufficient steroid medication - #HidrocortisonaJÁ.
Example of the emergency hydrortisone injection kit now provided in Brazil by ABA.
ABA have launched their next campaign, translated to mean "No more waiting, hydrocortisone and synthetic ACTH NOW". Below Adriana Fadel and Adriana Santiago from the ABA kindly tell us more about the charity and their campaigns, in the hope it will help other countries and organisations requiring similar support and action.
Olá from Associação Brasileira Addisoniana
"We are Adriana Fadel (President of ABA, doctor and Addison's Disease patient) and Adriana Santiago (Vice president, psychologist and Leticia's mother, also an Addison's Disease patient). Together, we founded ABA in April 2019. The Association supports people affected by Addison's Disease, Secondary Adrenal Insufficiency, and Congenital Adrenal Hyperplasia.
We were extremely honoured to have had ABA join Adrenal Causes Together (ACT) Panel created by ADSHG, to exchange information about the Covid-19 pandemic and its action to patients with adrenal insufficiency.
We got a very helpful letter of support to the implementation of the Emergency Kit in Brazil. As a philanthropic and non-profit institution, ABA lives on donations. ADSHG's support with particular guidance from Vick Smith, Julie Watson and Dr John Wass we managed to publicize the Emergency Kit on two websites: the Brazilian Society of Endocrinology and Metabolism and on the Brazilian Society of Paediatricians.
Our sincere thanks to patient support groups Addison's Disease Self-Help Group (ADSHG), Alex The Leukodystrophy Charity, The CAH Support Group; Endocrinology Advanced Nurse Practitioner Lisa Shepherd and Professors of Endocrinology, Prof. Simon Pearce and Prof. John Wass for their expert support and knowledge.
Read the ACT Panel Open Letter here
Next Campaign – Hydrocortisone in Brazil #HidrocortisonaJÁ
Our next action is to get hydrocortisone to be manufactured in Brazil, since our patients only have access to it through manipulation pharmacies, by importing from other countries or through "Hospital das Clínicas", a hospital that sells it only to patients who are a part of the Institution.
We got in touch with a large Brazilian pharmaceutical firm that is willing to manufacture Hydrocortisone in presentations of 5mg and 10 mg in tablets which then could be distributed for free by the Brazilian government."
Launched in 24th April 2021 – please support ABA's campaign "No more waiting, hydrocortisone and synthetic ACTH NOW" by signing their petition and sharing online using the hashtags: #HidrocortisonaJÁ, #VoltaACTH and #AbaddisonBrasil.
Sign the ABA #HidrocortisonaJÁ Petition here
Adriana Fadel tells us: "The campaign aims at two main points:
The return of the synthetic ACTH drug, to be distributed by the government again and its manufacture by the national pharmaceutical industry;
The manufacture and distribution of oral hydrocortisone by the national pharmaceutical industry and its distribution by the government.
The campaign consists of publicizing on social media short videos of ordinary and famous people, giving their support to the campaign and propagation of the petition to the Ministry of Health with our demands.
We have already got the support of doctors, some celebrities and most important of all, the Brazilian Society of Endocrinology and Metabolism.
While it is in progress, we continue to work to improve the effectiveness of the neonatal screening throughout Brazil because it came to our attention that in the North and Northeast areas of the country, the screening is not always done or the result with the diagnoses of CAH arrives only after the baby's death.
Read more about #HidrocortisonaJÁ
Associação Brasileira Addisoniana – Patient Support Charity
Our first steps are welcoming patients through social media, registering and locating all of them, which was never done before in Brazil. Our following project was making and distributing Identification Cards, that also did not exist in our country. The distribution is still free of charge for the registered patients – 500 people, approximately. Then, inspired by ADSHG, we started making the first Emergency Kits for Brazilian Addison patients, with medicine, inputs, application manuals and package insert for the medication. The Emergency Kits are available to adults and children and are also free of charge.
Since Adrenal Insufficiency is not a common disease, we created some material with important information for doctors and nurses who work in the emergency rooms to spread awareness and save lives. As this project takes place in hospitals, it had to be interrupted because of the Covid-19 pandemic but it will come back as soon as possible.
We have immense affection and admiration for ADSHG who guide us and help us grow to be able to support and welcome the largest number of patients in Brazil. Thank you very much for the affection with our Association.
Author: Associação Brasileira Addisoniana (ABA)
To hear more from ABA follow them on Instagram, Facebook, Twitter and visit https://en.abaddison.org.br
What is the Adrenal Causes Together (ACT) Panel?
The Adrenal Causes Together (ACT) Panel is a group of representatives from the world of endocrinology and adrenal causes from around the world. The ADSHG is a member of the ACT Panel and attends regular meetings with the panel (over video conference) to share knowledge and work on initiatives together to improve the lives of people with adrenal insufficiency.
As part of Adrenal Causes Together (ACT) we support each other in our shared aims to standardise and maximise the care that people with adrenal insufficiency receive globally.
Who is included in the ACT Panel?
Attendees include representatives from:
Associação Brasileira Addisoniana
Alex The Leukodystrophy Charity
CAH Support Group
Federation of International Nurses in Endocrinology (F.I.N.E)
The Addison's Self Help Group (ADSHG)
The Pituitary Foundation
World Alliance of Pituitary Organizations (WAPO)
We also would like to thank the multiple Endocrine nurse specialists and Endocrinologists, who despite their busy work commitments, join ACT meetings and review and support ACT's work to promote excellence in clinical care of adrenal insufficiency throughout the world. As part of the ACT, we look forward to continue contributing, supporting and learning with international groups in the future. Please get in touch to hear more and collaborate with ACT Panel - our aim is to have representatives from as many organisations around the world as possible!
Useful Links to Organisations around the World
Part of this article was first published in the December 2020 edition of the ADSHG magazine.
Published: 22nd May, 2021
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