Spring 2001 – Factor Nine News

The Coalition for Hemophilia B

Topics In Hemophilia

• Results of the Insurance Survey
• Hemophilia Support Site
• Aventis AB Choice Program/ NASCAR Trucks
• Factor IX Family Meetings/FIX Plant Tours
• Positudes

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Survey Results
We thank you for your participation in the Towers Perrin Insurance Survey. Below are the results of this survey. The survey was done by Towers Perrin, an independent consulting firm. David Miller, of Towers Perrin will keep us informed on further results of the survey.

Approximately 800 people participated in this survey. 11% of people with hemophilia A (Hemo A) and 22% with hemophilia B (Hemo B).

Average Bleeding Episodes per month – 1.5 Hemo A, 1.2 Hemo B.

Percent who treat prophylactically – 43% Hemo A, 45 % Hemo B.

Average Monthly Units of factor consumed by individuals who treat prophylactically – 9,980 Hemo A, 15,870 Hemo B.

Average Monthly Units of factor consumed by individuals who do not treat prophylactically – 4,970 Hemo A, 6,700 Hemo B.

Locations where individuals receive treatment for their condition: Home 45%, Inpatient 13%, Outpatient 19%, Hemo Health Care Center 3.7%, Other 4%.

Annual Income of all respondents: $25,000 19%, $25k-50k 22%, $50k-75k 23%, $75k-100k 18%, $100k 18%.

Employment Status of all respondents: Full-time 62%, Part-Time 12%, Self-Employed 10%, Unemployed 16%.

Size of respondent’s employer (total employees): 100 53%, 100-499 15%, 500-999 6%,1000 22%.

88% of respondents have insurance through their current employer. 45% said health insurance was a primary factor in their decision to take their current job.

Source of health insurance: HMO 26%, PPO 20%, POS 1.7%, Indemnity 16%, Other Commercial Insurance 3%, Medicare 10%, Medicaid 12%, State High-Risk 4%, Pharmaceutical Company Assistance 1%, Out-of-Pocket 5%, Military 1%.

Average out-of-pocket costs per month for factor – Hemo A, $133.00, Hemo B, $198.00.

15% of respondents had lost health coverage at some point in their life.

44% of all respondents are enrolled in plans with lifetime benefits caps.

3% of all respondents had exceeded their cap. Average time before exceeding the cap was 8 years.

40% of respondents who had not yet reached their cap expected to do so at some point in time.

11% of respondents have ever deferred needed medical care for fear of hitting the cap.

Respondents indicated that the cost of factor and their proximity to the lifetime cap did not strongly influence the amount of factor that they take.

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HEMOPHILIA SUPPORT SITE
The Hemophilia Support Site has moved. The new Web Site is: Http:/www.Support-lists.com. Click on mailing list to subscribe to hemophilia support. For more information please contact Gary Marshall at Recombfac9@aol.com.

[Note: This has since changed. The correct address is http://www.coalitionforhemophiliab.org/. Information on the mailing lists can be found at http://www.boygenius.com/lists.html.]

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AVENTIS BEHRING – AB CHOICE PROGRAM
Aventis Behring Choice is a new program for people living with bleeding disorders. AB Choice offers benefits to patients, their families, healthcare professionals, and others in the bleeding disorder community. It is founded on the following four pillars:

• Open distribution network,
• Customized support services,
• Educational resources, and
• The Aventis Behring Foundation for Research and Advancement of Patient Health.

These pillars represent Aventis Behring’s dedication to patient choice, to community involvement, and to quality care, support, and education.

Another central feature of AB Choice is customization. Educational resources and services will be individualized, and patients will work with Aventis Behring to develop new AB Choice programs.

A number of educational resources are available to members including print materials, workshops of sports participation and family forums.

Aventis Behring also hosts events such as the popular Victor Lane Kids NASCAR races. As an additional service AB Choice will be offering its members the opportunity to apply for Quality of Life Patient Grants in mid-year 2001.

AB Choice is not a direct program – AB choice was developed to support the open distribution of coagulation products. Open distribution means customers can obtain products from all the sources that they are accustomed to utilizing, including PHS centers, hospitals and homecare companies.

The Aventis Behring Foundation for Research and Advancement of Patient Health will this year make available $1,000,000.00 in support for clinical care, basic research, day-to-day operations and community programs. The details of the foundation will be available by September 2001.

Applicants working on basic science and clinical research at hemophilia treatment services, as well as not-for-profit organizations dedicated to serving the bleeding disorders community may apply for funding.

For more information on how to enroll as a member please speak to a customer care representative at 888-508-6978 or you can visit the website: http://www.AventisBehringChoice.com or email ABChoiceTeam@Aventis.com.

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VICTORY LANE KIDS
Do you dream of arriving at NASCAR’s victory lane on race day? If so, AB Choice’s Victory Lane Kids is for you. Meet NASCAR Craftsman Truck series driver Lance Norick as he and his team, sponsored by Aventis Behring, race for the coveted NASCAR Craftsman Truck Championship.

AB Choice’s Victory Lane Kids invites children & adults to the race track for a fast-paced day of racing, learning and downright fun. Victory Lane Kids participants share a meal, meet Aventis Behring team driver, Lance Norick, ask questions of Lance and his crew and even listen to Lance and his team communicate during the race. Victory Lane Kids has traveled the country stopping in dozens of cities like Seattle, Cincinnati and Richmond. Over 2400 patients and their families were at the races to cheer Lance last year.

Aventis Behring is proud to support these events and looks forward to meeting families at the races. To get advance ticket information regarding a race in your area, one needs to enroll in AB Choice. Please see previous page on contact information.

2001 RACE SCHEDULE Gateway Intl Spdwy, Madison Il May 6
Pikes Peak Intl, Fountain, CO May 20
Memphis Motorsport,Millington, TN Jun 23
Milwaukee Mike, W. Allis, Wis. June 30
NH Intl Spdwy, Loudon, NH July 21
Nashville Super Spdwy, TN Aug 10
Chicago Motor Spdwy, Joliet IL Aug 18
Nazareth Spdwy, PA Aug 26
TX Motor Spdwy, Forth Worth Sept 15
Las Vegas Motor Spdwy, NV Oct 14
California Spdwy, Fontana, Nov 13

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FACTOR NINE FAMILY MEETINGS
Our Factor Nine Family Meeting was such a huge success at the NHF this past year, that we would like to have meetings with families throughout the USA. Meetings will be held on a weekend day in areas with three or more families in attendance. Get to meet other factor nine families, share experience and knowledge. As we come together we also learn how to best meet your needs. If you are interested in attending please call Kim Phelan at (212) 213-0547 or email Kim at Hemob@ix.netcom.com

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FACTOR IX TOUR
We are blocking out dates for those with factor IX and their families to tour one of Aventis Behring’s collection and testing centers and the plant where mononine is manufactured. You must be 18 years or older to attend. One tour will be in July and the other in August. Tour dates will be on a Monday thru Wednesday. If you would like to attend please contact Kim Phelan at The Coalition for Hemophilia B at (212) 213-0547 or email Kim at Hemob@ix.netcom.com

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NEW COMPANY
POSITUDES, INC.

The only full service pharmacy that returns 100% of factor profits to charitable service organizations. Co-founded by Vincent Fusaro, a licensed Pharmacist, who brings over 20 years of pharmacy experience, and Lawrence Madeiros, an established local and national community advocate. Vinny and Larry, both living with severe factor IX deficiency came together one year ago from diverse professional backgrounds but from very similar personal experience, to form a unique concept called POSITUDES.

Together with the support of their wives, Maryann and Carol and their children, Michael (16), Jacqueline (15), Ashley (3), and Taylor (18 mos.), they have created an idea that just makes sense. Money made from the sale of factor products returned to the community that uses those products – that’s POSITUDES.

POSITUDES, INC.

• To provide medication to those with chronic disorders at no costs in excess of insurance reimbursement, except for cost required to be paid by governmental agencies. Assistance with obtaining insurance coverage and being a patient advocate for product safety, treatment, insurance and quality of life issues in a positive and pro-active manner.
• Toll free, 24 hour hotline, with overnight shipping regardless of location.
• To obtain protocol options, assist and educate virally discordant couples on treatments which are available to have biological children, and to provide support service to those with chronic disease and their families.
• To disseminate information regarding chronic disease, promote and protect the privileges and interest of those individuals with chronic disease.
• 100% of all profits from the proceeds of distribution of factor products go exclusively back to existing charitable organizations to educate and maintain quality of life for those living with chronic disorders.

For more information please call POSITUDES at their toll free number (866)POSITUDES or call Vinny direct at (516) 377-7850 or Larry at (518) 863-2668 email: positudes2000@aol.com