Adrenal Alternatives Foundation is a 5o1c3 nonprofit patient advocacy organization dedicated to education, advocacy and encouragement for all adrenal disease. Below is a list of the programs and services we offer the disabled and rare disease community.
CORTISOL PUMP ADVOCACY
We are dedicated to providing adrenal insufficient patients who have failed traditional oral steroid treatment with the resources to safely and legally begin the cortisol pumping method. This involves educating physicians on how to manage this protocol and also ensuring patients have affordable access to a pump and supplies. Our clinical team provides care plan guidelines to physicians seeking to manage the cortisol pumping method. Our team is dedicated to helping patients obtain insurance approval and we have aligned with the organization CR3, who provide pumps and supplies to adrenal patients. with or without insurance coverage. We have created resources such as our Cortisol Pump Guide Book and also the Cortisol Pumping website to help guide patients in their pumping journey.
ADRENAL AWARENESS INITIATIVE
Our Adrenal Awareness Initiative is a program we have created with downloadable materials such as: printable pamphlets, power point presentations, educational videos and advocacy images designed by our clinical team to educate patients, caregivers, family members, physicians, paramedics and all other medical professionals on how to recognize and manage adrenal insufficiency. These materials are available on our website and we also mail awareness packets with the complete program enclosed.
We are actively working to change legislation that all qualified EMS personnel in the USA are authorized to administer the life-saving Solu-Cortef injection, which is not currently the case. Not all emergency medical personnel are allowed to administer life saving cortisol replacement 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 Rare Disease Legislative Advocates, CIAAG- Chronic Illness Advocacy and Awareness Group , Danny’s Dose and Adrenal Insufficiency Protocols who actively work to legislate for patient rights.
Our team also represents adrenal disease directly in congress through the Rare Disease Legislative Caucus. Our team proudly serves on the COVID19 response, Public Policy and Healthcare Access congressional committees.
We are currently conducting a survey on Quality of Life in adrenal insufficient patients on steroid medications in preparation for a pilot study to explore the differences of various steroid replacement methods and medications to treat adrenal insufficiency. There has never before been a study that compares all forms of steroid administration for the treatment of cortisol deficiency, therefore this information will provide insight into the effectiveness of various management tools in adrenal disease care.
We are working on innovations that create more biotechnology to manage adrenal disease such as our Emergency Injection Instruction QR code that provides instant access to instructions on how to administer the life saving cortisol injection.
Unlike diabetics, who can check blood glucose instantly, there is currently no way to check cortisol blood levels outside of a lab setting. Adrenal patients must be constantly vigilant of their cortisol levels, which can drop in an instant. Research and technology advances are desperately needed to manage this difficult disease.
Adrenal Insufficiency 101: A Patient’s Guide to Managing Adrenal Insufficiency book contains factual information supported by credible medical sources, patient surveys and personal testimonies of real adrenal patients.
Cortisol Pump 101: A Patient’s Guide to Managing the Cortisol Pumping Method book includes medical studies, clinical research and documented patient empirical evidence on how to safely and effectively manage the cortisol deficiency via the infusion pump.
CORTISOL CARE CENTER
We are in the process of obtaining the funding to open a cortisol care center to provide the most up to date management tools to treat all forms of adrenal insufficiency. There is currently no center in the United States which offers imperative testing such as cortisol day curves and comparative lab assays of saliva, blood and urine cortisol levels. Our center will service every form of adrenal disease and offer alternative cortisol replacement methods such as the cortisol pump.
Our foundation podcast discusses topics to help adrenal disease sufferers discover every possible resource to manage their health and features interviews with medical professionals, biotech innovators and leaders in patient advocacy.
1.Subcutaneous Hydrocortisone Injection Protocols
2.Emergency Cortisol Injection Instructions
3.Cortisol Pump Proposal Letter to Your Doctor
4.How to Treat an Adrenal Crisis
5.How to be Tested for Adrenal Insufficiency
6.Guide to the Cortisol Pump
7.Guide to Steroids
9.Explaining Adrenal Disease
10.Cortisol Pump Insurance Appeal Letter
11.EMS/Paramedic Protocol Advocacy Instructions
12.Adrenal Disease- Testing, Treatments and Symptoms
13.Caregiver Guide to Adrenal Disease
14. Know your Rights- Covid Restrictions and Patient Rights
Adrenal Alternatives Foundation is a 5o1c3 nonprofit patient advocacy organization dedicated to education, advocacy and encouragement for all adrenal disease. EIN: 83-3629121.
We appreciate all contributions which allow us to further our mission, Education, Advocacy and Awareness for all adrenal disease. We also accept donated insulin pumps and supplies for our Pumps for Purpose Program.