Raptiva Rebound and Insurance

[gailandray]

My husband continues to suffer daily from the rebound effects of Raptiva. This drug caused his condition to be much worse than anything he had previously experienced. He has tried numerous treatments to counter the side effects from Raptiva and has not had much success. He's presently on Soriatane. To continue the battle, a request was submitted to the insurance company for the purchase of a portable narrow band UVB unit. Trips to the nearest facility providing such treatment would entail approximately ten hours per week in travel time which would result in lost work time. Today we heard from the insurance company. According to Morris Associates "any durable medical equipment, prosthetic appliance, or orthotic device having convenience or luxury features which, in the determination of the Claims Administrator, are not medically necessary" are not covered. Hence, one person, Karen, decided that home phototherapy is a luxury and a convenience and therefore should not be covered. We're going to appeal and I am seeking advice from those who may have traveled this journey.
Gail

[MikeK]

Hi Gail,

Ouch! I'm sorry to hear that Ray is going through such a hard time and that the insurance company is adding to his misery. :mad: :(

The NPF has an insurance advocacy service. They'll be happy to help you get through this. Here's a link that describes their service: http://www.psoriasis.org/medical/advocacy/ and here's the NPF's contact information:

National Psoriasis Foundation
6600 SW 92nd Ave., Suite 300
Portland, OR 97223-7195
Phone: (503) 244-7404 OR (800) 723-9166
Fax: (503) 245-0626

Their regular business hours are Monday through Friday, 8:00 a.m. to 5:00 p.m. and their in the Pacific Time Zone.

Good luck. Hang in there. Keep us posted and give the NPF a call a.s.a.p.

Hope this helps.

Mike

[PJ Leary]

Hi Gail,

I am sorry to hear about the initial denial from the insurance company. However, in my experience in fighting them, that one is so ludicrously worded it should be fairly easy to overturn. You could ask for an apology on top of it.

NPF has help, as Mike mentioned ( thanks for the link, Mke ). They are very experienced at helping to get home uvb covered, and have letters they can and will send on your behalf to the insurance company.

Generally, there is a special form the dr must fill out, a sort of prescription purchase order, which is good for thirty days from the date it is written. In the past, I have purchased my home units from National Biologic, and they are also experts at getting these units covered. between pressure from you as the client, the derm, the NPF and the provider, it should be an easy fight.

Please let us know if we can help any further. I hope Ray is feeling better soon.

[gailandray]

Thanks Mike and PJ,

I took your advice and am waiting to hear from Joey. Home phototherapy should not ever be considered a luxury item. It's hard to believe that someone in a position to make life-altering decisions can lack the knowledge to make an informed decision! I do appreciate your support and I will keep you posted. I'm not going to let this rest.

gail

[mama]

You go girl! I just have a feeling that you will get Ray exactly what he needs!

Good Luck!

[chaimFL]

Gailandray......

How's the soriatane comming along for your husband?? Has he tried Neoral yet, it's usually know to work better and faster than soriatane or MTX. I've seen reports of the nasty rebound flare that can came along with Raptiva and I'm sorry your husband is fighting that.

[gailandray]

Thanks for asking! No, he hasn't tried Neoral yet. Actually, we haven't heard of it. At the NPF in Chicago, we heard that Soriatane is more effective in conjunction with phototherapy so that's the route we've pursued. Our present roadblock is the mindset of the RN at Morris Associaties who seems to think that home phototherapy is a luxury item!!!!!!! She actually had the ____ to say that a three hour round trip 3 or 4 times a week in addition to a demanding full-time job was something one should do if he/she wishes to feel better. I could go on...... but it might not be pleasant. We need to work together to fight for the rights of all p sufferers!!!! I often wonder about what the poor folks do! Sometimes I feel like I have a new mission. My other mission is struggling readers.

gail

[jeremytevebaugh]

Just curious about this "Raptiva Rebound". Have personally been on it for 2.5 years and have had no sid e effects whatsoever. Was your husband on it for some time and than got off the meds and have a large breakout?

[gailandray]

I'm glad to hear you are doing well. My husband's condition worsened while on the Raptiva. Have you been injecting regularly for 2 and 1/2 years? Is this something you plan on doing indefinitely?

gail

[Kimbercat]

I was on Raptiva for 12 weeks in a clinical trial, and did great. I would have loved to stay on it indefinitely, but the study was for 12 weeks on then 12 weeks off. As I was advised at the beginning of the study, the drug does not remain in your system after stopping injections, so the rebound flare I experienced about 3 weeks after stopping was not a surprise. I tried Neoral during the 2nd half of the study (another 12 weeks), but couldn't tolerate the side effects (nausea and severe fatigue), so I quit after about a week and a half on that.

I'm now in a study for Humira, and doing quite well again. Very rapid response: I saw a difference after a week! I'm having no problems with this drug either. I will be getting injections weekly for 12 weeks, then will either continue the drug or receive a placebo (blind study) for the next 12 weeks. At least I can keep enrolling in new studies until some of these drugs that work for me are approved by the FDA. I'm pretty comfortable using them, since although they are new for treating p, some of them have already been around several years to treat other diseases and are FDA approved for those uses.

[jevers]

Gail--
A word of advice on this....appeal, appeal, appeal!! Have Ray's dermatologist write a letter stating that a home unit would be an advantage in controlling his p. Be sure the dermatologist specifically states how much of his body is affected by the p.

Another option...file a complaint with your state insurance commissioner. Insurance companies are (usually, if not always) required by state laws to respond to the insurance commissioner within a certain number of days (ex: 5, 10, or 15) and they will have to give a specific, contractual reason why the claim was denied. If you go this route, give the insurance commmissioner a copy of the letter from the dermatologist.

Frequently, if the plan does not exclude the denied service (in this case, durable medical equipment), then they have a harder time justifying the denial and will just give in.

Lastly...never, never give up!!

Take care, and good luck!!!

[gailandray]

I didn't give up. The derm wrote another letter, and Joey from NPF sent a strongly worded letter and 19 pages of additional information. In addition, I requested a new reviewer from the ins.co. As a result of all of this, the denial was overturned and the purchase of home UVB approved. The order went in on Friday so we hope to have it this week.

I certainly appreciate all the support and encouragement from everyone here.

Thanks,
Gail

[Kimbercat]

Good for you, Gail! Hope it works better for Ray than the Raptiva did. Congratulations.