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Paying for treatment I live in San Jose, CA and recently turned 21. I used to be covered by CCS, but coverage stops at age 21, so now Im without coverage. Currently I am going to school and working, so i cant afford much, but I believe I have a bad absess. I havent even been able to get checked to see how bad the damage is and Im worried. My boyfriend is helping me come up with ways I can get my tests and procedures paid for without going bankrupt. Unfortunately we havent found a solution yet. The only thing I can think of is moving to Canada, but Im leaving that as a last resort. If anyone can give me any ideas it'd be greatly appreciated. Thanks in advance!
Submitted by janie rey on Wed, 2007-11-14 19:19. categories [ Medication and Treatment ]
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Hi Janie,
I’m sorry that you’re having health problems. Where do you think the abscess is? Quite a few CGD patients have had them in their liver. You definitely need to get medical care.
Many CGD patients go to the National Institutes of Health (NIH) in Bethesda, MD. Medical care is excellent there. It is free, but you may have to pay for your first visit. We have been going back there for about 30 years and I would be glad to e-mail you more information cgda@socal.rr.com
My sons (Erik, age 30 and Stephen, age 26) have CGD and live in CA (Pasadena area). They also had CCS and now both have Medi-Cal/SSI. I believe both had to apply 3 times and with Stephen we had to hire a lawyer. The lawyer, a specialist in Social Security/Disability, worked on contingency. They (the lawyer & Stephen) collected back payments from when Stephen first applied for SSI. Out of this the lawyer took a percentage. The lawyer even made a 2 hour trip up to where Stephen was living (UCSB) as he felt the judge there would be a little more lenient. Also we had a good letter from a doctor explaining what CGD is, etc. There are some good ideas on his lawyer's (Samulon) website: http://www.disabilitylawcentral.com/ I believe Erik and Stephen both get about $860 per month. I could be wrong on this figure. Together they pay $1200 rent and they have a little money left for food and bills. Stephen is attending graduate school at UCLA so money is tight, but they manage.
Erik and Stephen see doctors and get medicines from both NIH and UCLA. There are no charges for these visits or medicines. Some medicines are not covered by MediCal, so they get those at NIH. NIH does not supply interferon gamma. They have found a good dentist and MediCal pays for this.
I would try to get in contact with NIH and also apply for Medi-Cal/SSI. You may need a lawyer, but make sure he works on contingency and specializes in social security/disability.
Hope you’re feeling well soon. Don’t delay getting help.
Mary Hurley