CortiCare App - Adrenal Alternatives Foundation
Unlike diabetic patients who have glucometers, adrenal disease sufferers have no meter to check their cortisol levels. They must be constantly vigilant of their own low cortisol symptoms. The excitement from a happy event, the sadness from a death of a loved one or the strain from exercising are examples of things that would cause the body to release more cortisol. In an adrenal insufficient person, this does not happen. They must artificially manage their cortisol, which can differ from day to day. They require an emergency cortisol injection if their levels drop to a critical point.
Education on the proper management of cortisol deficiency is scarce within the medical community. Advances such as circadian rhythm dosing can make massive improvements in quality of life for adrenal patients, yet most are unaware of this advancement.
All EMS personnel are not authorized to administer the lifesaving cortisol injection in the event of an adrenal crisis.
Our app will allow instant access to lifesaving medical protocols to recognize, treat and prevent low cortisol episodes (adrenal crisis).
Specific adrenal diseases are rare in occurrence, however, the incidence of diseases that impact cortisol and require the need for cortisol replacement medications are not. There are many forms of adrenal disease, but the treatment for all cortisol deficient conditions requires steroid replacement medications, leading us to believe that the innovations the CortiCare app will provide will benefit many rare diseased populations where the condition results in cortisol deficiency.
The following statistics indicate the prevalence of all cortisol related conditions that require cortisol replacement. All statistics are based on an annual scale in the United States unless otherwise noted. Research references can be obtained from the link below- https://adrenalalternatives.co...
Over 1,000,000 people in the US and Europe have been diagnosed with cortisol related conditions such as:
Adrenal adenoma- According to the American Cancer Society, adrenal adenomas are found in 1 in every 10 people who have an imaging tests of the adrenal gland.
Adrenocortical carcinoma- It is estimated that diagnosed 600 people are diagnosed in the United States each year.
Addison’s disease– Prevalence estimated to be between 40 and 60 cases per 1 million in the general population.
Antley-Bixler syndrome- (ABS) has been described in more than 100 patients.
Adrenoleukodystrophy– According the Stop ALD Foundation, this condition affects 1 in 18,000 people.
Cortisol Dysregulation– The WHO states that conditions where in which cortisol dysregulation is indicated, form a part of a group of illnesses termed as “noncommunicable diseases” (NCDs) accounts for the majority of deaths with 17.9 million people dying annually. Noncommunicable diseases (NCDs) kill 41 million people each year worldwide, equivalent to 71% of all deaths globally[8]. In the Americas, 5.5 million deaths are by NCDs. Research also highlights the fact that cortisol dysregulation is present in up to 40% of stroke patients.
Cushing’s disease – An estimated 10-15 per million people are diagnosed with this condition in the United States every year.
Congenital adrenal hyperplasia (CAH)– The most common form of CAH, 21 hydroxylase deficiency, affects approximately 1:10,000 to 1:15,000 people in the United States and Europe. Among the Yupik Eskimos, the occurrence of the salt-wasting form of this disorder may be as high as 1 in 282 individuals.
11-Beta hydroxylase deficiency– It is estimated that 11-beta-hydroxylase deficiency occurs in 1 in 100,000 to 200,000 newborns. This condition is prevalent in Moroccan Jews living in Israel and occurs in approximately 1 in 5,000 to 7,000 births.
17a-hydroxylase deficiency– 17a hydroxylase deficiency has an estimated prevalence of 1 in 50,000 to 100,000.
3-Beta-hydroxysteroid dehydrogenase deficiency– Human 3 beta-hydroxysteroid dehydrogenase deficiency (3b-HSD) resulting from HSD3B2 gene mutations has an estimated diagnosis of less than 1/1,000,000.
Congenital lipoid adrenal hyperplasia– Exact statistics for Americans diagnosed with this condition are unknown, however recent studies estimate the rate for this mutation seen in Asian populations to be between 1 in 200 and 1 in 300 people yearly.
PORD (P450 oxidoreductase deficiency)– Estimated annual incidence of 1/100,000-200,000.
Hypopituitarism– Globally, the prevalence is estimated to be 4.2 cases per 100,000 per year, and the prevalence is approximately 45.5 cases per 100 000 people.
Panhypopituitarism– Estimated annual prevalence of 45.5 cases per 100,000 people.
Pheochromocytoma– The prevalence is estimated at 1:2,500 to 1:6,500 patients annually.
Pituitary Adenoma– 9.3 cases per 100,000 population yearly.
Secondary Adrenal Insufficiency– Yearly estimated prevalence is 150–280 per million.
Sheehan’s syndrome– Incidence of Sheehan syndrome is estimated to be 5 patients out of 100,000 births.
Lymphocytic Lypophysitis– The prevalence is approximately 1 in 9 million.
The WHO states that conditions where in which cortisol dysregulation is indicated, form a part of a group of illnesses termed as “noncommunicable diseases” (NCDs) accounts for the majority of deaths with 17.9 million people dying annually. Noncommunicable diseases (NCDs) kill 41 million people each year worldwide, equivalent to 71% of all deaths globally. In the Americas, 5.5 million deaths are by NCDs. Current Research also highlights the fact that cortisol dysregulation is present in up to 40% of stroke patients.
CortiCare app provides access to lifesaving protocols that can be easily provided to patients, caregivers and medical professionals and catalogues a patient’s health to prevent life threatening adrenal crises from occurring. The app will also provide data patients can provide their healthcare providers to improve quality of life. In the future, we also hope to integrate it will upcoming adrenal technology and have secured confirmation that SOLUtion medical’s upcoming Twistject emergency cortisol device will be interfaced with our app. The Twistject is an epipen like device which can administer cortisol in the event of an adrenal crisis. Additionally, we hope to integrate it with infusion pump methods similar to how diabetics manage their insulin with devices such as Medtronic and Omnipod pumps, which interface with Dexcom sensors, etc. The use of the cortisol pump is a massive innovation we are hopeful to see integrated with our app in the future.
People die from this condition simply because there is not enough awareness on how to treat it, even within educated medical professionals due to its supposed "rare" incidence. This app is a much needed innovation so people can easily access the information on how to recognize, treat and prevent adrenal crisis.
Despite research supported, legal, medical advances, cortisol deficiency patients remain a poorly served demographic with high mortality rates and low quality of life.
Barriers In current cortisol care- Cortisol testing in emergency room situations is not a current standard of care.
- There is currently no center in the United States solely dedicated to managing cortisol care. Vital testing to manage cortisol deficiency such as 24-hour cortisol day curve testing is not available. This test evaluates the effectiveness of a patient’s cortisol replacement medication by drawing a cortisol blood lab once an hour for 24 hours and provides insight on a patient’s cortisol metabolism and absorption.
- Patient’s cortisol levels are tested initially at diagnosis but typically are not tested after diagnosis to evaluate effectiveness of their steroid replacement.
- Comparative assays of blood, urine and saliva testing to help establish a correct steroid dosing milligram and regiment are not offered in standard endocrinology clinics.
- Cortisol deficiency patients are not typically given multiple options to manage their care. The lack of cortisol replacement options is likely due to poor clinician awareness on the latest research showing standard administration of hydrocortisone 2-3x daily is inadequate to replicate the body’s natural cortisol production.
- Advances in cortisol replacement medications are available in the United States, but awareness of options such as all steroid medications and alternative cortisol delivery methods such as subcutaneous injections and the cortisol pumping method are not prominent.
- There is currently no way to check blood serum cortisol levels outside of a laboratory setting.
- Education on the proper management of cortisol deficiency is scarce within the endocrine community, who are mainly educated on diabetes and thyroid conditions. Advances such as circadian rhythm dosing can make massive improvements in quality of life for adrenal patients, yet many endocrinologists are unaware of this advancement.
- All EMS personnel are not authorized to administer the life saving cortisol injection in the event of an adrenal crisis.
- Early detection and diagnosis prior to experiencing adrenal crisis.
- Access to and awareness of all steroid options, which includes oral medications, subcutaneous cortisol injections and the cortisol pumping method.
- Access to and awareness of testing that can evaluate cortisol deficient conditions and provide clinicians with insight on better cortisol regimens and replacement methods.
- Education on the importance of medication compliance and the need to increase dosing in times of stress, sickness or injury.
- Advancements in research to create biotechnology such as a cortisol meter.
This app will be a gateway to save, improve and change lives. Knowledge is power and adrenal patients deserve the chance to have quality of life.
Adrenal Alternatives Foundation's team is a combination of cortisol deficient patients and also medical professionals. We have done much preliminary research into the specific needs of the cortisol deficient community with projects like our international Quality of Life survey, which asked poignant questions on life with cortisol deficiency. (We would be happy to share the results with MIT) Additionally, our founder has this condition and started this organization because she saw the needs of the community and decided to form an organization help fill in the gaps that the medical community/insurance companies/etc did not. AAF is also aligned with front runners actively working to improve cortisol care such as National Adrenal Disease Foundation, EveryLife Foundation and Adrenal Insufficiency United and have received much support from pharmaceutical companies such as Eton Pharmaceuticals and Diurnal who have created new medications for cortisol care. In addition, we have a working relationships with companies such as ZRT laboratory and SOLUtion medical who also provide innovation for this demographic. We have the knowledge, the ability and more importantly the heart to complete this app.
- Optimize holistic care for people with rare diseases—including physical, mental, social, and legal support
- Support daily care management for patients and/or their caregivers
- Mitigate barriers to accessing medical care after diagnosis which disproportionately affect disinvested communities and historically underrepresented identity groups
- Enhance coordination of care and strengthen data sharing between health care professionals, specialty services, and patients
- Empower patients with quality information about their conditions to fight stigma associated with rare diseases
- Promote community and connection among rare disease patients and their advocates
- Concept
We are a small non profit organization tacking huge issues. Our team's tenacity has served us well and we have accomplished many feats, but can only go so far without appropriate funding. We are applying to this challenge because this innovation desperately needs to be created to save and improve lives. On a humanitarian level, if more people knew HOW to manage this condition, so many lives could be saved and people with this condition would have better chances at quality of life. On a financial level, we are a 100% volunteer organization, we need funding to further our mission of advocacy and access for all cortisol care. Our founder spends 40 hours a week minimum working for this organization to help save people from her fate. She was on her way to a medical degree when an adrenal crisis almost ended her life and rendered her disabled. She was worked for years to publish books to provide vital information and created Adrenal Alternatives Foundation to raise awareness of how vital cortisol care is. The funding this challenge would provide would allow AAF to improve the work we are already doing, extend our reach and help many rare disease demographics. Cortisol patients deserve the chance to live and this app will help them do that.