Hello, 

I am looking for any support from this community to assist in my husbands recient diagnosis of Systametic Capillary Leak Syndrome.  He has been through two hopsitilizations in the past nine months due to insurance denying his treatment of IVIG as a prevention to his condition.  Is there anyone in this group who has dealt with insurance issues and denying IVIG coverage?  We are really desperate for some help and answers from anyone who is will to share.

 

thank you

Angela and Rick

I know it is frustrating. I had 4 episodes before I was diagnosed. In addition  I even went to Mayo Clinic, but because I live in texas they could not treat me. I had to find a local doctor that was willing to take on my rare case. My primary has been of little help. After months,
I found an allergist: immunologist that was willing and actually Interested in my case. She worked with Dr. Druey  and did a peer to peer with my insurance  to get them to fill medication. So after 8 months of my last  9 day ICU episode I finally was able to get my IVIG infusions. 
you must be your own advocate  with a doctor that is willing to do the extra steps. If you are in Texas I can give you information privately.

Gail

 

 

Angela and Rick, welcome to our SCLS Community!

I'm sure we'll be able to help you. All of us have faced, and for the most part have overcome, IVIG insurance-coverage obstacles.

First, however, do yourselves a favor and please provide as much information as possible on your husband’s medical journey to date in your profile page, https://rareshare.org/profiles/acderusha, as all other members of this community have done.

Little details like which hospitals and which insurance companies you have dealt with might enable us to assist you better because it's all a case-by-case situation.

Second, you should also check out past discussions of this or related issues, as in https://rareshare.org/topics/2203 and https://rareshare.org/topics/2199 and https://rareshare.org/topics/2031.

I see that you live in the USA, where IVIG has been an FDA-approved biological for many decades. The bad news is that when it comes to IVIG for SCLS, that is NOT yet an FDA officially approved indication -- and thus IVIG for SCLS is what's called an off-label use of IVIG, which means that insurance companies have discretion to approve or deny it.

The good news is that insurance companies usually first deny but then approve such off-label use whenever the appeal is a convincing one, namely, whenever the appeal mentions the cost of past hospitalizations which could have been prevented, includes examples of authoritative medical literature, and comes with supportive letters from your husband's own physician and, especially when your own doctor is not affiliated with a major medical center or is not familiar with prescribing IVIG, from one or more renowned or highly reputable physicians.

I can send you via email examples of such authoritative medical literature. I can't do that via this website, but I can do it -- and have done it countless times -- directly in reply to an email request to my personal email address, which is: aporzeca@american.edu

As concerns obtaining letters from highly reputable physicians in the USA, the most persuasive letter your husband’s insurance company can possibly get is one written by Dr. Kirk Druey, the world’s leading published expert on SCLS, who is on the staff of the U.S. National Institutes of Health, see https://www.niaid.nih.gov/research/kirk-m-druey-md for his bio and https://ned.nih.gov/search/ViewDetails.aspx?id=%2bl4y7JXTKB5MOYrJi3IIZ8xWor2o0lG0OJ17t%2bpi%2bWM%3d for his email address and office phone number.

Therefore, I suggest that you have your husband’s physician call or write Dr. Druey ASAP to request such a letter, and if he/she will not, then for you or your husband to do so yourself.

Of course, Dr. Druey cannot write such a letter without having received copies of your husband’s medical and hospitalization records, and he might also rightly insist that your husband schedule an appointment to come to NIH (located in Bethesda, MD) in person to be met and examined by Dr. Druey and his colleagues. Therefore, you and your husband’s doctor will have to take steps to make it possible for Dr. Druey to write such a supportive letter to his insurance company.

Good luck and let us know how it goes!

Arturo

Arturo and Gail,

 

Thank you both so much for your outreach and replies.  I am so greatful to have found this community and the information you have all provided.  Thank you Arturo for the very detailed information, links, articles and deep dive into navigating the insurance game.  And thank you very much Gail for sharing your personal experience and story with myself and Rick.  Rick is newly diagnosed and dealing with this condition and the fact that this group exists and is engaging means the world to new members. I will have Rick join the group as I am sure he will want to know and share with people who have shared his experinence and can relate first hand.  We are lucky this forum was created and we are forever members of this CLS famliy.

 

We are very grateful for all your support and information

Angie and Rick