Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
I have been diagnosed with CVID for about 12 yrs. I have had routine infusions with my levels going back and forth. when I was first diagnosed my levels were non existant. Does anyone know if anything besides the infusions that seem to help? I am at my wits end, I am going broke with getting them and I cannot continue the medical debt that is piling up. Insurance is always a problem. I have had my doctors approve my medicine but yet i am stuck with a $2000 bill every month. Has anyone worked with insurance and know how to get treatment without being denied or broke? Has anyone tried a different diet and noticed a change? has anyone tried Colostrum and seen improvement, I have tried to do research as someone said try it but I am not finding much? I know every case is different but right now I will try anything to help. Its very hard being a mom of 4 and always worrying about your children and husband and how long I will live. my dad died when I was young due to complications and its always in the back of my mind. if anyone has any insite or useful information i would appreciate it. Thank you!
I know that infusions are SO expensive. It's really wrong that a life saving treatment can be allowed to bankrupt people. My suggestion would be to contact your specialty pharmacy to see if they have a hardship program. Most do, but you have to ask directly for financial assistance-they won't offer it. I filled out a very simple financial aid form with my specialty pharmacy and they pay for everything that my insurance company doesn't cover which saves me about $1k a month, so it's definitely worth asking for.
If you get to the point where you absolutely can't afford infusions and you've exhausted every avenue, you can talk to your doctor about taking a daily antibiotic to help prevent infection - this is kind of a last resort. Infusions help protect you from infection and help protect your organs from further damage, but prohpylactic antibiotics are sometimes used in patients who can't tolerate infusions, so this may be an option to discuss with your doctor.
Wishing you all the best.
I don't know if you get infusions at home or at an infusion center, but hospitals often have hardship programs so checking out infusion centers may be helpful, or if you do subq, manufacturers often have co-pay assistance cards.
Definitely talk to your Dr about options.
I have Medicaid CareSource to be exact and they pay for them completely. Have you thought of applying because due to our disability ( I hate that word btw, a new norm is better) you qualify for assistance? The number of medical bills are calculated into income so you very well may qualify for assistance. I will pray for you and speak life into your situation every time you think of death. The power of thoughts and words is real. I found this scripture in the bible right before my first lung surgery Luke 8:48 Daughter, thy faith hath made thee whole; go in peace.