For several years, there has been a State High Risk Pool mechanism in the United States. While these High Risk Pools vary by state, they take some common forms. 35 states have established traditional high risk pools that are intended to be “alternative mechanisms” to deal with people who have conditions that prohibit their ability to secure insurance in the private insurance market. In most cases, the states that have existing high risk pools allow for “medical underwriting” in some part of their local market and offer these programs to allow access for high risk clients. In past Alliance conferences, you may have heard some discussion about these high risk pool programs and the possible growing prevalence of hemophilia patients in these programs. While these programs have helped high risk patients, they are generally more costly than the private market and if patients have been without insurance, many state high risk pools will require pre-existing condition clauses or waiting periods before benefits can kick in.

Along with the healthcare reform package, the federal government established the opportunity for a Temporary Federal High Risk Pool with an allocation of $5 billion to run through December 31, 2013. Allocations by state have already been determined and Secretary Sebelius issued a bulletin in April that essentially allowed states to either develop a temporary pool on their own, or the federal government would do it for them. As of last week, 4 states are under agreement with several others pursuing this work, many of them through their existing state high risk pool mechanism.

There are notable differences when comparing the requirements of the temporary federal high pool to existing state high risk pools. The primary differences are the following:

• The individual must be uninsured for at least 6 consecutive months prior to enrolling
• The individual must be a United States citizen
• Premium rates will be derived from the average individual market rate for a similar benefit package (referred to as 100% of the Standard Risk Rate)
• The individual must meet the pre-existing condition requirement established for a qualified high risk pool (this will vary by state but is likely to evidence of lack of comprehensive coverage, denial of coverage or presence of certain medical conditions)

PLEASE NOTE: additional eligibility criteria are likely to apply on a state by state basis and may vary, but the above criteria are mandated.

While there are many implications to the Temporary Federal High Risk Pool, there are a few worth noting that may be applicable to member Hemophilia Treatment Centers (HTC’s).

1. The temporary pool provides hemophilia patients with an additional mechanism if they reach existing plan lifetime caps (keeping in mind they would have to find a way to get through the 6 month gap of being uninsured to qualify).
2. If you are a member HTC providing fee care, charity care or community benefit to uninsured individuals/patients, some states may allow providers to purchase the insurance for the patient/member if they qualify. For those HTC’s that are part of an institutional setting like children’s hospitals this may have broader implications for your case management and patient accounts teams. While this is not in every state, the prior state high risk pool mechanisms often prohibited this, it is not explicitly prohibited under thi federal rules. States however may take a more conservative approach on their own and not allow a provider to purchase coverage.
3. Unlike any other program, if you are aware of qualified uninsured individuals/patients, coverage can be obtained day 1, with no waiting periods and no concern over a preexisting condition.
4. Most states are likely to choose to do this program as a variation to their existing state high risk pool mechanism, so the benefit packages are likely to be somewhat consistent with that. That means, the relationship between an HTC and its existing state high risk pool (assuming one exists) is likely to be carried into this federal program for the payment and authorization of Factor.

The Alliance is happy to continue to update you on this issue and will be available to answer any questions you may have at the September conference. If you have any questions or concerns prior to that, please feel free to contact Roland Lamy at (603) 225-6633 or at RLAMY@HELMSCO.COM.

The Hemophilia Alliance has just completed the 2010 funding cycle, again this year they have donated in excess of $300,000 to the hemophilia community.

“The Hemophilia Alliance Foundation serves as an excellent role model by investing in other nonprofit organizations serving the bleeding disorders community, and by making the application processes a simple one. The recipient organizations have many needs and few revenue streams. The Alliance Foundation grants make an important difference in the operations of these organizations.” Joyce Strazzabosco, Hemophilia Alliance Foundation Grants Committee Chair

Joe Kleiber, Vice President for Chapter Services, National Hemophilia Foundation,
“The Hemophilia Alliance Foundation Grants are a much needed source of financial support for the NHF Chapters, other non-profit organizations, Hemophilia Treatment Centers (HTC) and the HTC Regions. Their dedication to these organizations shows an unprecedented commitment to crucial infrastructure support. The collaborative partnership that the Alliance has offered the community is vital to our growth and our ability to serve the bleeding disorders community.”
“Hemophilia of Indiana serves Indiana residents with bleeding disorders, their families, employers and others who are impacted by hemophilia, von Willebrand disease and other forms of bleeding disorders. We do this with a modest budget. Thanks to the Hemophilia Alliance Foundation, the Indiana Hemophilia & Thrombosis Center and other HTCs across the country, we were successful in securing a grant from the Foundation that will enable us to develop professionally produced public service announcements and longer form videos. The PSAs will be produced in a way that will allow them to be adapted for use by other NHF chapters, as well. The PSAs and videos will be important tools that help us tell our story in ways we were not able to do before. Hemophilia of Indiana and other NHF chapters are fortunate that the Hemophilia Alliance Foundation exists to provide critical funding for new programs that expand the advancement of our mission,” says Michael Perigo, CFRE Development Director.

“It is wonderful to see the momentum generated on behalf of the Hemophilia Community. Through a fantastic partnership and through forward-thinking by members of the Hemophilia Treatment Centers and Foundation Committee members, we continue to realize our vision of reinvesting resources into improving the lives of our patients. This is very gratifying given the challenges HTC’s and patients face each day.” Mark Plencner, RPh Chair, Hemophilia Alliance

The Foundation has again provided $5,000 in funding to each of the 12 federal hemophilia regions in support of their annual meetings. These meetings provide a forum for hemophilia care providers to exchange information and share best practices.

We are planning another round of funding in 2011. Leaders of tax-exempt organizations that serve people with bleeding disorders who are interested in more information should contact Joe Pugliese at the Alliance offices, 1758 Allentown Road #183 Lansdale, PA 19446, joe@hemoalliance.org 215-439-7173, or visit our web site.

*The Alliance is a not-for-profit organization that is currently comprised of 80 Hemophilia Treatment Centers. The purpose of the Alliance is to assist its members in providing outstanding care for their patients. Our mission as The Hemophilia Alliance is to provide member Hemophilia Treatment Centers with resources and services to sustain the Comprehensive Care Model for individuals with bleeding and clotting disorders. For more information about the Alliance and how you can help further our mission visit us at www.hemoalliance.org or email us at info@hemoalliance.org

Contacts:

Kathryn Goldstein
972/581-5529
kgoldste@vha.com

Sean Singh
727/ 388-7326
sean@hemoalliance.org

IRVING, Texas/ Lansdale, Pa (January 14, 2010) – The 340B Prime Vendor Program, managed by Apexus, and the Hemophilia Alliance announced today an innovative collaborative effort to assist participating federally funded hemophilia treatment centers in maximizing the benefits of 340B Drug Pricing Program and Prime Vendor Program discounts. The two organizations are working together to assure that covered entities serving the hemophilia community have access to the best possible products and pricing. The collaborative partnership became effective January 1, 2010. “We are excited about this collaboration because it enables us to significantly expand upon the current value the Prime Vendor is delivering to our participants serving the hemophilia community. Hemophilia is a very specialized area and it made sense for both organizations to work together in serving their common customers.” said Chris Hatwig, Vice President of Apexus. Mark Plencner, Chairperson of the Hemophilia Alliance stated “this collaboration gives both organizations the ability to think globally but act locally and keep the focus on delivering outstanding patient care.”

The Hemophilia Alliance

In 1973, the National Hemophilia Foundation launched a campaign to establish the creation of a nationwide network of hemophilia diagnostic and treatment centers. The idea was based upon providing a range of comprehensive services for patients and families within one treatment facility. Today, the Hemophilia Alliance provides member Hemophilia Treatment Centers with resources and services to sustain the Comprehensive Care Model for individuals with bleeding and clotting disorders. The concept of comprehensive care is to treat the whole person and the family, through continuous supervision of all the medical and psychosocial aspects of bleeding disorders. Comprehensive care is total care because every facet of the person is addressed, including their physical, emotional, psychological, educational, financial and vocational factors. The development of comprehensive care over the past 30 years, has greatly improved the quality of life for people with bleeding disorders, helping them to be more independent and productive. The treatment center care network has also lowered patient’s morbidity and provided cost-effective care in the long term. For more information about the Hemophilia Alliance, contact (215) 279-9236 or email at info@hemoalliance.org

The Apexus 340B Prime Vendor Program

The Prime Vendor Program was established to increase the discounts already offered under Section 340B of the U.S. Public Health Service Act, providing low-cost drugs to clinics, hospitals and programs for low-income Americans. Over 13,000 providers across the country qualify to participate in the discount program at no cost, and more than 9,600 facilities are currently enrolled. Apexus Inc., an Irving, Texas-based not-for-profit wholly owned subsidiary of Provista, a group purchasing organization co-owned by VHA Inc. and the University HealthSystem Consortium, administers the program. Visit the Section 340B Prime Vendor Program web site at http://www.340bpvp.com/ for more information about the program.

Click here to read this press release in PDF format.

The next meeting of the Hemophilia Alliance will take place from February 21st to 23rd, 2010 at the Paris Hotel in Las Vegas, Nevada.

• February 21 to 23, 2010
• Room rate $99 per night
• To make your reservation please call the hotel reservations at 1-888-266-5687 and refer to your group code SPHPA0
• Room cut-off is 1/29/10
• This rate is being made available to us one day before and one day after the meeting.

See a PDF of the meeting announcement by clicking here.

The Hemophilia Alliance Foundation announced the culmination of its first grant cycle with the awarding of more than $250,000 to organizations serving people with bleeding disorders. The funding focused on strengthening the effectiveness of the recipient organizations. The goal was to fund one-time project requests and reward collaboration between two or more organizations. The Foundation approved funding for such projects as board development, technology purchases and upgrades, establishment of a regional advocacy group, educational meetings and educational materials.

“The Hemophilia Society of Colorado is proud to receive a 2009 grant from the Hemophilia Alliance. As a Chapter that has been going through some transitional pains, we are greatly appreciative of the support of our Hemophilia Treatment Centers in helping us better meet the needs of our community. We look forward not only to working collaboratively with our local HTC, but also to demonstrating to other Chapters how a functional Chapter should be modeled – one that is truly accountable to the hemophilia community and capable of focusing and delivering on its Mission Statement and long term goals. Such a level of cooperation is essential to improving life for all persons and families dealing with bleeding disorders, now and in the future.” reported Treasurer, Nathan Wilkes.

Joanne Davis, MD, wrote, “At the University of Miami, we are committed to ensuring that our patients and families have complete access to all available educational and financial assistance information. This commitment requires us to make sure that all materials are presented in clear, concise and comprehensible language – both English and Spanish. The 340B program represents a significant savings for eligible families, as well as a source of income to improve and expand HTC services. However, the concept and mechanism of implementation of this program can be confusing! We are very pleased to be able to make our Spanish language 340B materials available to Alliance members, through the support of a grant from the Alliance.”

Robert Fox, President and CEO of the Mary M Gooley Hemophilia Center, wrote “These grants enable people with bleeding disorders to participate in educational offerings, advocacy initiatives and a variety of other programs. The Alliance Foundation is one way that HTCs with factor programs support the communities they serve. In New York, the Alliance Foundation is supporting a statewide effort aimed at giving patients access to elected officials and other decision makers.”

The Foundation also provided $5,000 in funding to each of the 12 federal hemophilia regions in support of their annual meetings. These meetings provide a forum for hemophilia care providers to exchange information and share best practices.

A second grant cycle is planned for early 2010. Leaders of tax-exempt organizations that serve people with bleeding disorders who are interested in more information should contact Joe Pugliese at the Alliance offices 1758 Allentown Road #183 Lansdale, Pa 19446. joe@hemoalliance.org 215-439-7173, or visit our web site.

*The Alliance is a not-for-profit organization that currently comprises 74 Hemophilia Treatment Centers. The
purpose of the Alliance is to assist its members in providing outstanding care for their patients. Our mission
The Hemophilia Alliance provides member Hemophilia Treatment Center with resources and services to
sustain the Comprehensive Care Model for individuals with bleeding and clotting disorders for more
information about the Alliance and how you can help further our mission visit us at www.hemoalliance.org
or email us at info@hemoalliance.org.