CAPS -- Bleeding Disorders Association of Northeastern New York (BDANENY), Inc.

The other day I received a call from a case manager of an insurance company about a patient who has been receiving his factor from the 340B factor program of his Comprehensive Hemophilia Treatment Center. Her comment was so upsetting that I thought that there had to have been a mistake. The Hemophilia Treatment Center’s recent request for an authorization for this patient’s prophylaxis order of factor would go over his cap. Not annual cap, but lifetime cap! The cap is $500,000 and it was met in less than a year! An authorization would be given for 3/4 of the order. Upon follow up I found out that his Hemophilia Treatment Center’s Social Worker had told him, a couple of months prior, that his cap was about 1/2 way reached and that serious thought would have to be put into a solution before it was reached. Now it appears that he will need to take advantage of the Compassionate Care Factor Assistance program to cover his need for about 6 months while he is looking for a new insurance policy or a new job with benefits.

I am not telling you this tale of woe to be morbid or cause worry, but to point out that there are things to be aware of and concerned about. There are some things you can do so that you can manage a cap.

We all know how life catches up with you and you figure that you will get around to taking care of an issue as soon as you have handled the other things on your plate. Well, we know how that goes. After considering the information in this article, I hope that you get around to taking care of the issues of: Do I have a cap? Is it annual or lifetime? How much is my maximum? Is there a less costly method of obtaining my factor? Does my choice of factor have less costly alternatives?

In previous articles, I did discuss that you must be aware if your insurance plan has a lifetime or annual cap. You must also know what the mystery number is. Five million is very different than One million. If there is a cap, there are a couple of things you must do.

First, start to keep close tabs on every medical expense – especially factor.
One way to “stretch” the benefits is to get your factor from the 340B factor program of a Comprehensive Hemophilia Treatment Center. However, please make sure that the factor program has a mark up which is cost saving. There is no regulation on the amount a 340B entity can mark up their factor, since the factor programs are meant to provide revenue for the Comprehensive Hemophilia Treatment Center programs and services.
Another consideration, if it is an option, is to use a factor product that is less costly. If you feel this may be an option, you must discuss it with your physician.

The next thing you do, after reading this newsletter, should be to enroll in the Factor assistance or gap program for the product you use. These programs require pre-registration – with a third party who does not share your information with the manufacturer (HIPAA Law). I have outlined each of the current programs that are in existence now.

If you do not sign up with a manufacturer’s assistance or gap program and reach a cap or lose insurance, you will have one more manufacturer’s option. Some of the manufacturers have Compassionate Care programs. These programs will provide a specific amount of free factor for a limited amount of time. Keep in mind, the amount of factor is less than the assistance / gap programs that require preregistration. So again, I say, when you are finished with this newsletter please enroll in your product’s Assistance or Gap program. You can call the program for a form to be sent, or, in some instances, you can enroll online.

Following this article is a list with brief explanations for the Patient Assistance Programs of the major factor manufacturers. Please call to get the specific information on the program for the product you use. I strongly suggest that factor users enroll in the program that fits their factor usage. Also, if you use different products, enroll in each program.

In closing, I would like to mention a meeting I attended in Syracuse in June. A group of Hemophilia Treatment Center Staff and patients and families met to discuss our desire to start a New York Hemophilia Advocacy Group. Robert Fox, Director of The Mary M. Gooley HTC, spearheaded this meeting. This first meeting was very productive, and has set the foundation for the future for New York Hemophilia Advocacy. We are currently working on talking points so that our Legislators can be educated. Patients and their families are being sought to participate. Participation can be the simple act of calling or visiting your local Representative to educate them about hemophilia and the issues you face. If you are interested, we would welcome hearing from you. David Huskie "bdaneny at aol.com" (518) 782-9787 or "lmugford at nybloodcenter.org" (516) 478-5045. (For email, replace " at " with "@")

Factor Assistance Programs: Baxter Factor Assist Program
For every four months of usage, a credit is earned for one month of factor coverage. Credits are also earned for enrolling and for previous enrollment in Baxter or other non- Baxter factor assistance programs. The maximum redemption credits range from 150,000 units to 250,000 units based on years in the program.
1-888-BAXTER9

Bayer Factor Solutions Program
For every three months of usage, you can obtain one month of factor coverage. The maximum amount for this program is 180,000 units during a 12 month period.
1-800-288-8374

CSL Behring Assurance
For every three months of usage, a certificate is issued for one month of factor. The maximum amount for this program is 12 months of usage.
1-866-415-2164

Wyeth Factor Resource Program
Free factor will be provided with proof of prior usage for a least 3 consecutive months. The maximum amount for this program is 200,000 units during a 12 month period.

Grifols Patient Assistance Program
After a minimum of three months of usage patients are eligible for factor.
1-888-474-3657

Novo Seven - SevenSECURE
Patients in need are eligible for up to six months of free factor.
1-877-668-6777