FACIAL LIPOATROPHY RESEARCH PROGRAM OVERVIEW

The Maple Leaf Medical Clinic and CIRC believe that the issue of HIV-related facial lipoatrophy (FLA) is extremely important and requires action immedately. "Lipoatrophy," is the loss of fat from specific areas of the body -- most distressingly the face but also peripheral parts of the body, such as the arms, legs and buttocks. This side effect has presented HIV-positive people with profound social and psychological challenges.

In the fall of 2005, the OHTN granted fu ding for CIRC and collaborators across Canada to establish a facial lipoatrophy research program with the following components:

1. Stakeholders Meetings
2. Review of FLA Background, Pathogenesis, Research and Treatments (Dec 2005)
3. Comprehensive review of possible products and treatments (Dec 2005)
4. A 2-year study using Bioalcamid and looking at quality of life was completed and presented at CAHR (May 2006, 2007)
5. Dr. Wendy Wobeser (Queen’s University) completed a research study to investigate the effects of facial lipoatrophy on the quality of life and general well being of HIV infected individuals.
6. Policy Development to Ensure Access to Treatment Across Ontario
7. Proposal to Ontario government to have HIV-related treatment considered reconstructive therapy and therefore qualify for coverage under the provincial health plan.

Update

Several meetings have taken place with policy advisors. The focus of these meetings has been to obtain guidance on approaching the Ministry of Health and the process involved in getting the products on the formulary and covered under OHIP.

• On April 21, 2006 CIRC met with Carol Jacobson from the Ontario Medical Association
• On April 27, 2006 CIRC met with representatives from the Ontario Minister of Health Hon. George Smitherman’s office
• On May 4, 2006 CIRC met with Frank McGee from the AIDS Bureau, Ministry of Health and Long Term Care

Pur Medical, the Canadian distributor for bioalcamid used all of this information to submit a request to have bioalcamid covered by OHIP and was declined.   Although the faceforward program continues to assist with the cost of this treatment, this still leaves a substantial amount that the patient is responsible for.

Lobbying efforts between Ontario, Quebec (Lipo-Action) and British Colombia continue. We believe that it is the combined efforts of all groups that will strengthen the message necessary to reach our common goal- changing the perception of governments that this is facial reconstruction and should be covered on all provincial formularies.