by Kristen R. Bellur
Whether it is from a PPO or HMO plan, there is, unfortunately, no single path to follow to achieve a streamlined, simplified, and expeditious approach to obtain IVIG – on a "fast-track" that would work for everyone. While one wishes it was possible to reduce the process to a few simple steps, one can still navigate what must be done. I’ll attempt to highlight some of the more important steps I have taken in dealing with my HMO plan to obtain this treatment for PF.
As a general rule, it is important to document everything, keep copies of all medical records, lab tests, and read medical articles pertaining to Pemphigus. I have also found it very useful to develop a written table listing my drug schedule/tapering, for easy reference. That way I have over 6 years of valuable information concentrated on just one page, very easy to understand and use.
Key Points:
1) Educate yourself in order to present your case professionally to your health plan.
2) Interact with your plan in writing so you have a record.
3) Address correspondence to the top administrator within your plan.
4) Confirm all phone conversations with your plan in writing. List what was verbally agreed upon in writing, so you are prepared to deal with new people within the system.
5) If you go through grievance procedures, request copies from your plan – you may be surprised to find out who makes the decision and on what it is based.
Bear in mind the ultimate responsibility is with you, the patient, to deal with your health plan. Use the points stated above – a written approach and all your acquired knowledge and skills – to tackle the task of dealing with your health plan. You are up against corporations that have a large complex bureaucracy and very clever accountants and lawyers well skilled in the matrix management. My point here is not to criticize or indict, but to be pragmatic – this is a business, and you have to treat it like a business: professionally.
I think that it is where so many patients fail or give up when faced with adversity. I’d guess that if health plans said "yes" to everyone the first time, they’d go under. So it has seemed to me that they necessarily have road blocks to deal with that. I have learned to accept these road blocks, and look at them as just something to get around. One must be tenacious.
That said, belligerent attitudes are not necessarily called for. Preferable is the "kill them with kindness" approach. It is important for us to understand that health insurance providers seldom have guidelines to follow when it comes to rare diseases, so they will usually decline your request at first. It is then up to you to convince them that your treatment is vital and that it would also most likely be beneficial to them in the long run if they approve your proposed drug/treatment, because if you are in a long-term durable clinical remission, they will save money – always remember, they are businesses, and it comes down to a bottom-line issue, fair or not.
The next important point is that you should try to find a team of experts/specialists who you. (for HMO plans, some of them will most likely be outside the plan providers). This might be the most important point so I’ll elaborate and share my personal experience.
I could never have achieved my goal of getting IVIG treatment approved and administered at my local HMO if it was not for the cooperation, support and guidance I received from an expert outside provider, M. Peter Marinkovich, M.D. at Stanford University. Dr. Marinkovich specified my treatment course, wrote the protocol for administering the treatment, and he was always available for consultation during the 7 months of therapy. It’s important to understand that many patients in smaller communities deal with HMO/PPO plans who don’t have physicians on staff or on preferred provider lists qualified to handle the treatment of rarer diseases – it’s not cost effective for them. Therefore, as in my case, the prescription/protocol for IVIG came from an outside provider, but the therapy could be administered within the plan. The result was a compromise that worked.
After completing the IV treatment, I decided to prepare and forward a proposed simplified, expeditious, and streamlined – a "Fast-Track" – approach for IVIG to be followed in the future. The proposal has now been accepted by my local HMO plan as standard procedure for Pemphigus patient. It gives me peace of mind to know that other patients needing the treatment in the future will not have go through the difficulty I did.
I’ve met some people at the IPPF annual meetings who accepted their "fate" too easily and settled for inferior drugs and/or treatments from their health insurance plans, because they took "NO" for an answer. I hope by briefly highlighting the most important aspects of my struggle to obtain IVIG treatment that I may in a small way help or embolden other patients in the same situation to take on their health insurance plan.
This is not an easy task. It can become a continuing crusade to get more expensive drugs and treatments approved. Therefore, I believe it is important to be determined, perseverant, and undaunted by set-backs. After all, the quality and quantity of your life is worth it!
