Dear S,

With any rare disease, it is often difficult to get the insurers to understand the dearth of experts in the field and the importance of having care by those with substantial clinical experience with the rare disease. On our web site, we have a section called Dealing with Managed Care. You might want to read it over. We do recommend that families try to chose insurance plans that will give them flexibility in care, such as PPOs or Indemnity plans, if they are offered through your employment. While they are more expensive, they allow you the flexibility to seek care from the experts. If you have open enrollment in the fall as many companies do, you might want to look into this option.

Also, if you live in NJ, the NJ Catastrophic Illness in Children Relief Fund is a wonderful resource. This fund exists only in NJ and in MA. I am honored to serve as a Commissioner of this Fund. If your out of pocket expenses exceed 10% of the family’s net annual income, then you can apply for relief from the fund. So, if you end up paying for the care and those expenses exceed, say $ 5,000 in any given year (you can include the cost of insurance) and your income is $50,000, then you can apply. Assets are not looked at, only income. Also you don’t have to pay the bills, just incur the obligation. The fund will negotiate the bills with the provider. Your out of pocket obligation would be only $500.00 or 10% of the bills. You can reach the fund at 609-292-0600. This is available for NJ residents only. The MA program info is on our web site under the Managed Care section.

If you think it would help, CARES could write a letter on your behalf talking about the necessity of expert care and Dr. New’s reputation in the field.

Sincerely,

Kelly R. Leight, Executive Director
CARES Foundation, Inc.
(Congenital Adrenal hyperplasia Research, Education and Support)
973-912-3895
866-227-3737 (toll free)
email: kelly@caresfoundation.org
URL: www.caresfoundation.org
Disclaimer:
Any communication from CARES Foundation, Inc. is intended for informational and educational purposes only and in no way should be taken to be the provision or practice of medical, nursing or professional health-care advice or services.  The information should not be considered complete or exhaustive and should not be used in place of the visit, call, consultation or advice of your physician or other health-care provider.  You should not use the information in this or any CARES Foundation, Inc. communication to diagnose or treat CAH or any other disorder without first consulting with your physician or healthcare provider. Any referral to physicians is provided as a courtesy only.  CARES Foundation, Inc. does not specifically endorse or recommend these physicians.