Public Affairs

July 8, 2004

The Honourable George Smitherman
Minister of Health and Long-Term Care
Hepburn Block
10th Floor
80 Grovesnor Street
Toronto, ON M7A 2C4

Dear Minister,

We are writing to you today to encourage you to continue your efforts to find a solution to the problem of sub-optimal care for adults with thalassemia in Ontario.

The undersigned are members of the national Network of Blood Disorder Organizations, representing the Aplastic Anemia and Myelodysplasia Association of Canada, the Canadian Hemophilia Society, the Canadian Hereditary Angioedema Society, the Canadian Immunodeficiencies Patient Organization, the Nutropenia Support Association and the Thalassemia Foundation of Canada, funded with a Health Canada National Voluntary Health Organizations Sector Development Grant.

The goal of the network is to raise the level of awareness and knowledge of the patient groups’ roles in the following key issues: the advantages of specialized care centres for complex, rare disorders, the importance of patient registries, the tracking of blood and blood products to permit inventory management and effective recall and notification procedures, and the need for active adverse reaction reporting and post-marketing surveillance of therapies used to treat these disorders.

At a meeting of the network in Toronto on June 19 and 20, 2004, we learned from both patients and physicians about the problems encountered by thalassemia patients in Toronto, and were encouraged to hear that your Ministry has recently committed to finding solutions.

The participants unanimously agreed to express their support for the improvements currently being proposed by the Thalassemia Foundation of Canada based on a Day Hospital model including:

• removal of the limit on the number of adult patients treated
• adequate support for physician, nurse practitioner, clinical nurse specialist and transfusion nurse, and administrative positions
• a transfusion suite, examining rooms, and office and support facilities
• ongoing scheduled care (transfusions, chelation treatment, routine follow-up and regular specialist consultations)
• an inpatient on-call coverage program
• an effective transition program for adolescent and young adult patients that would help the difficult move from a pediatric to an adult facility
• unscheduled, acute care not requiring inpatient hospitalization
• increased psychological and social work support.

A comprehensive thalassemia care program would also provide a resource for specialized care for patients living in other Ontario centres. This is critical to the survival of these patients.

In addition, as a national network, we see the importance of developing a recognized centre of excellence in Ontario, where the majority of patients reside, that could serve as a reference centre for physicians working in regions of the country where numbers are much smaller, and where expertise is lacking. In this challenging era for health care, such inter-provincial cooperation is essential in the treatment of conditions such as thalassemia.

Based on our experience with other rare, complex blood disorders, we believe such improvements will be cost-effective in the long run by promoting optimal disease management, reducing severe adverse events, and assuring more effective emergency care. Patients will benefit from better quality care, a higher quality of life, reduced risk of death and increased productivity. Participating hospitals will benefit from the concentration of resources and experience. The Ontario healthcare system will benefit from more cost-effective use of healthcare dollars.

Sincerely,

David Page
Secretary, Network of Blood Disorder Organizations

For:
Tom Alloway, PhD, Past-President, Canadian Hemophilia Society
Thomas J. Bowen, MD FRCP (C)
Jeanne Burnham, President, Canadian Hereditary Angioedema Society
Riyad Elbard, Vice-President, Thalassemia Foundation of Canada
Corrado Falcitelli, President, Thalassemia Foundation of Canada
Jacques Hébert, MD
James Kreppner, Secretary, Canadian Hemophilia Society
Silvia Marchesin, President, Aplastic Anemia and Myelodysplasia Association of Canada
Tina Morgan, President, Canadian Immunodeficiencies Patient Organization
Bruce Ritchie, MD
Gord Sanford, Board Member, Aplastic Anemia & Myelodysplasia Association of Canada
Shelley Schonwald, Secretary, Canadian Immunodeficiencies Patient Organization
Lorna Stevens, President, Neutropenia Support Association

August 25, 2004

The Honourable Ujjal Dosanjh
Minister of Health, Minister of Intergovernmental Affairs and Minister responsible for Official Languages
Minister's Office - Health Canada
Brooke Claxton Bldg., Tunney's Pasture
P.L. 0906C
Ottawa, ON
K1A 0K9

Dear Minister,

At a time when the Ministers of Health are preparing to discuss ways to work together to provide quality health care to Canadians, we, the members of the Network of Rare Blood Disorder Organizations, are writing to inform you of some exciting initiatives currently being planned.

The Network of Rare Blood Disorder Organizations is a coalition of national patient groups, formed to share the best practices in health care delivery for people with hereditary angioedema, primary immune deficiency, aplastic anemia and myelodysplasia, neutropenia, thalassemia, hemophilia and von Willebrand Disease.

These blood disorders share certain characteristics. They...

• are quite rare (fewer than 1 in 10,000 Canadians);
• are, in majority, chronic, hereditary disorders;
• have a significant personal and social impact;
• have serious, potentially fatal consequences;
• can be successfully treated but require care from specialized health care providers;
• involve treatment which is quickly evolving;
• involve aspects of home treatment by the patient or a family member; and
• require the use of blood, blood products or their equivalents.

The Network is currently working with the organizations and their respective Medical and Scientific Advisory Committees to elaborate models based on the concept of comprehensive care developed over the last 25 years in the hemophilia/bleeding disorders community. Care is delivered across the country to people with hemophilia and other bleeding disorders through a network of 24 comprehensive care clinics. Features of the model include:

• multi-disciplinary teams of health care providers able to treat all aspects of the disease and its complications, and provide guidance to physicians in outlying regions;
• Canadian treatment guidelines;
• an anonymous national patient registry facilitating the collection of reliable outcome data;
• training for patients and their families in home treatment, thereby almost eliminating requirements for ER and in-patient hospital care;
• a coordinated system for the distribution and tracking of blood products, thereby promoting appropriate utilization and the ability to effect recalls, when necessary;
• the Blood-Borne Pathogen Surveillance System, a bank of specimens to provide information on emerging infectious diseases.

Several of the 24 comprehensive care clinics have ultra-specialized laboratory facilities, capabilities in genetic diagnosis of bleeding disorders and expertise in the treatment of the most serious complications, and provide these services to smaller centres.

This network has proven its value in the treatment of people with bleeding disorders in Canada and around the world. One major U.S. study , conducted at the Centers for Disease Control (see study attached) has measured a dramatic decrease in morbidity and mortality among patients treated in comprehensive hemophilia care clinics when compared to those who are treated elsewhere. A second study (also attached) revealed a marked decrease in the rate of hospitalization among patients trained in home treatment in a comprehensive care clinic when compared to those who do not benefit from this mode of care delivery. Previous studies in Canada and the U.S. have shown how the provision of quality, supervised home treatment has significantly decreased the number of days lost from work and school for both the patient and his /her care provider in the home.

Presently in Canada, people suffering from rare blood disorders, with the exception of bleeding disorders, do not enjoy universal access to a coordinated network of health professionals to treat their conditions. In the absence of treatment guidelines, the quality of care varies from place to place. Home treatment is not always promoted. Access to research protocols is limited because patients and physicians scattered across the country are not connected through a patient registry. Family physicians often do not have access to expert advice. Some blood products cannot be easily traced, nor can their utilization be appropriately monitored and evaluated.

The members of the Network believe that the very successful care model developed to face the challenge of bleeding disorders can be adapted to these other rare blood diseases. A comprehensive care model would include:

• a network of designated specialized centres able to coordinate care in a particular region and cooperate on a national level;
• training in home treatment, where feasible;
• an anonymous national patient registry;
• Canadian treatment guidelines
• the expansion of the Blood-Borne Pathogen Surveillance System to include people from these other rare blood disease groups.

Innovative ways of sharing facilities, information and human resources, such as nurse coordinators and data entry clerks, across disease lines will have to be found in those parts of the country where the number of patients is small.

Such a model of health care delivery would respect the principles of comprehensiveness, accessibility and portability as outlined in the Canada Health Act through the creation of a network of centres providing quality care according to accepted standards for all Canadians, no matter where they choose to live.

Despite the challenges we all currently face in the field of health care, we believe that you, as Ministers of Health, and we, as representatives of patients, have the same goal: to ensure that finite health care dollars are spent rationally so as to promote the health of our citizens, reduce pain and suffering, and help people to live as nearly normal lives as possible.

We ask you, when in the coming months you hear more about our efforts to promote comprehensive care for rare blood disorders among health care providers, administrators and Ministry of Health officials, that you give serious consideration and support to our endeavours. For our part, we pledge to work constructively with you to find ways to provide the best care possible for people with rare blood disorders.

Sincerely,

David Page
Secretary, Network of Blood Disorder Organizations

For:
Peggy Adomaitis, Board member, Canadian Hereditary Angioedema Society
Tom Alloway, PhD, Past-President, Canadian Hemophilia Society
Suzanne Benoit, Board member, Canadian Hereditary Angioedema Society
Thomas J. Bowen, MD FRCP (C), Chair, Medical and Scientific Advisory Committees, Canadian Immunodeficiencies Patient Organization and the Canadian Hereditary Angioedema Society
Jeanne Burnham, President, Canadian Hereditary Angioedema Society
Riyad Elbard, Vice-President, Thalassemia Foundation of Canada
Corrado Falcitelli, President, Thalassemia Foundation of Canada
Jacques Hébert, MD, Co-Chair, Medical and Scientific Advisory Committees, Canadian Immunodeficiencies Patient Organization and the Canadian Hereditary Angioedema Society
James Kreppner, Secretary, Canadian Hemophilia Society
Silvia Marchesin, President, Aplastic Anemia and Myelodysplasia Association of Canada
Tina Morgan, President, Canadian Immunodeficiencies Patient Organization
Bruce Ritchie, MD, Chair of the Medical and Scientific Advisory Committee, Canadian Hemophilia Society
Sheila Rivest, Board Member, Aplastic Anemia & Myelodysplasia Association of Canada
Gord Sanford, Board Member, Aplastic Anemia & Myelodysplasia Association of Canada
Shelley Schonwald, Secretary, Canadian Immunodeficiencies Patient Organization
Richard Wells, M.D., Board Member, Aplastic Anemia & Myelodysplasia Association of Canada