Patient Support
Living with a chronic illness such as primary aldosteronism can bring financial hardship:
- Multiple medical appointments are necessary for diagnosis Patients often have to seek care out of state, or even outside their own country. It is not uncommon for patients with PA to have to redo some of the testing in a different medical center because of inconclusive results.
- Adrenalectomy and medical treatment often require travel as well.
- While in some countries the use of Eplerenone is not yet authorized for hypertension, in others it may only be allowed after treatment with Spironolactone has failed, or the drug may not yet be available as a generic.
- Other medications may be required to treat conditions such as diabetes, dyslipidemia or osteoporosis.
- Multiple antihypertensives and potassium supplements are often necessary.
- Patients may find that their insurance coverage is inadequate, and incur significant out-of-pocket expenses.
- Absence from work, or even loss of income all together, is not unusual over the course of illness.
Primary aldosteronism can also take its emotional and psychological toll on patients:
- In many, excess aldosterone induces high levels of anxiety, particularly when hypertension remains difficult to control.
- Resistance to stress is impaired in most patients.
- Social life can be altered, especially for those who include sodium restriction in their treatment.
- Physical limitations such as myalgia and cognitive impairment can be emotionally challenging, particularly for younger patients who can see some of their lifetime goals considerably curtailed.
- Until successful outcome, the uncertainty of surgical treatment weighs heavily on patients’ mind.
- Those affected by bilateral hyperplasia often have to cope with treatment setbacks and limitations, including sudden onset of comorbidities or the need to increase the dose of their mineralocorticoid receptor antagonist.
Patient Financial Resources
In the US, various organizations provide assistance to alleviate the financial burden associated with the management of chronic illnesses like primary aldosteronism. These organizations are national non-profit entities and include
AACE Prescription Savings Directory
List of Patient Drug Assistance Organizations established by the American Association of Clinical Endocrinologists.
Air Care Alliance
Volunteer-based organization providing patients in need with transport to facilities where they can receive care they would otherwise forego.
Air Charity Network
Charitable organization providing air transportation to medical facilities for citizens who are financially distressed or otherwise unable to travel on public transportation.
Hospitality Homes
Nonprofit organization providing short-term housing in volunteer host homes for families and friends of patients receiving medical care in the Boston area.
Mercy Medical Angels
Charitable organization providing transportation on the ground and in the air to clinical care for those in need.
National Association of Hospital Hospitality Houses, Inc.
Professional association of organizations providing lodging and support services to patients, families and their loved ones who are receiving medical treatment far from their home.
Needy Meds
National non-profit organization that connects people to programs that will help them afford their medications and other healthcare costs.
PAN Foundation
National non-profit helping underinsured patients with life-threatening, chronic and rare diseases get the medications and treatments they need by assisting with out-of-pocket costs.
Patient Advocate Foundation
National non-profit organization serving as a liaison between patients and their insurer, employer and/or creditors to resolve insurance, job discrimination and/or debt crisis matters relative to their diagnosis.
Patient Services Incorporated
Charitable organization providing financial support and guidance for qualified patients with specific, rare chronic diseases.
RX Assist
Directory of patient assistance programs
The HealthWell Foundation
Non-profit providing assistance to patients who cannot afford their co-payments, coinsurance, and premiums for important medical treatments
Patient Support Groups and Blogs
Joining an online support group and reading patient blogs can be an invaluable resource. Interacting with others can be comforting. It offers the opportunity to share experiences, discuss ways to cope with the disease, and learn about medical advances.
Conn’s Syndrome (hyperaldosteronism)
Support group hosted by Inspire.com
Conn’s Syndrome/Hyperaldosteronism Support Group
Facebook group aiming at sharing personal experiences and providing support to patients with PA.
Diagnosis: Hyperaldosteronism
Patient blog
Hyperaldosteronism & Conn’s Disease
A support group moderated by Dr. Clarence E Grim, a physician who trained with Dr. Conn.
Patient Advocacy Community for Hyperaldosteronism
Facebook group aiming at improving diagnostic rate of PA
The Primary Hyperaldosteronism Blog
Patient blog
The Stephen Cobb Blog
Patient blog
The Wayward Bus
Patient blog
