The Canadian Unrelated Bone Marrow Donor Registry: A Program at the Crossroads

Cam Hobson, M.D., Chair, National Advisory Committee, UBMDR, "Neutropenia Support Assoc. Inc., Volume 9, Winter 1997"

Introduction

The Canadian Red Cross Unrelated Bone Marrow Donor Registry (UBMDR) program will celebrate its Tenth Anniversary in 1998. For much of its nearly ten years of existence, the most poignant descriptions of it read: "the little program that could" or "the jewel in the crown of blood." The former insight is testimony to the volunteers and staff who have laboured to bring the very best out of the sometimes distressing environment in which they found themselves. They know that whatever is at the core of this program, it has grasped their hearts and will not let go. Traveling repeatedly across the country to meet with staff or volunteers, one is truck by the deep sense of commitment that motivates them to go that extra step despite the personal cost.

The latter expression touches on the very human engines that drive this program forward, no matter what the odds. They are Hope and Love. There is a motto in the program that says: "Hope sees the invisible, fools the intangible and achieves the impossible." As much as one may describe the program in terms of its medical, statistical and scientific parameters, its customers view the program as a means of expressing hope. The physicians who make reuses for a match for their patients do so in hope for a match for their patients do so as a final attempt to secure life. On a daily basis, family and friends of patients come to the program in the hope that the lives of their loved ones may be saved.

On the other end of the "customer" spectrum, there are the bone marrow donors who commit to providing their marrow despite the risks associated with a general anesthetic, or in some cases, the yet unknown factors involved in administering the human growth hormone G-CSF. All of this is done willingly because the donor knows that somewhere in the world there is a patient whose life depends on their commitment to share this vital part of themselves, Bruce Denniston’s donor describes being chosen as "Equivalent to having your lottery ticket listed as a winner." Conversley, one of the inextricable phenomenon in the program is "donor grief", which occurs when a transplant patient dies. The donor often feels a profound sense of loss, which is not infrequently transmitted as well to the staff. It would appear that in this commonplace world, the rarity of matching one human’s molecular structure to that of another human’s DNA is cause for a profound revelation of what binds us together as a human family yet which distinguishes us as unique individuals.

Program History

On one of those shining occasions when medical science combines with community spirit, the necessary forces came together to create a National Unrelated Bone Marrow Donor Registry for the country. In 1987, Bruce Denniston, a young RCMP officer, stationed in Powell River, B.C., developed leukemia, and required a bone marrow transplant to have a chance to survive. His fellow officers and friends in the community, determined to do whatever was necessary to start a bone marrow registry, set about to enroll donors, and raise the necessary funds for its support.

At the same time Dr. Hans Messner, the "father" of marrow transplantation in Canada, was pursuing the goal of establishing a National Unrelated Bone Marrow Donor Registry. With his colleagues, an approach had been made to the Federal/Provincial Advisory Committee on Institutional and Medical Services for the necessary regulatory approval.

Meanwhile, Dr. Noel Buskard, Medical Director at the Red Cross Blood Transfusion Center in Vancouver, was persuaded to prepare a detailed proposal for establishment of a bone marrow registry under the Canadian Red Cross Society, which was submitted in 1988 to the Canadian Blood Committee (CBC), and reviewed, in consultation with the Federal/Provincial Advisory Committee on Institutional and Medical Services.

The community campaign had become province-wide, with RCMP and municipal police participating enthusiastically, raising over $150,000 for the Bruce Denniston Bone Marrow Society. With a commitment from the B.C. Government for dollar-for-dollar matching funds, and a generous donation from the Woodward Foundation, $600,000 was provided by British Columbians to launch the registry through purchase of special equipment, supplies and provision of technicians’ and coordinators’ salaries.

In early 1989, although he had received his marrow transplant, Bruce Denniston passed away from associated complications. Despite this, the members of the Bruce Denniston Society, supported by many members of the force, vowed to persevere in their endeavors to develop the registry. (Raising almost $1.4 million to date). That year, the CBC approved the budget for the establishment and operation. A 3-year funding agreement by provincial and territorial governments was announced with a commitment of $2.25 million, based on per capita contributions. A target of 100,000 donors to be recruited over 3 years was reduced to 50,000 by the Conference of Deputy Ministers of Health upon recommendation by the CBC, with the proviso that "this number may be increased at a later date." The Deputies also endorsed the location of the Canadian national search coordinating centre (CNCC) in Vancouver, and the designation of Red Cross Blood centres with apheresis programs as appropriate bone marrow donor recruitment coordinators were appointed in Vancouver, Edmonton, Calgary, Saskatoon, Winnipeg, London, Hamilton, Toronto, Ottawa, and Saint John, with later expansion to Montreal and Quebec City. Office space was often makeshift, staff inexperienced, and funding inadequate, but the dedicated commitment of staff and volunteers continues to support remarkable expansion of this unique program.

The Program Now Into the 21st Century

Today, with more than 160,000 donors, the Registry responded over the past year to approximately 225 Canadian patients in need of bone marrow transplant, and more than 500 international patients seeking a donor match. This demand on the program comes from a need far exceeding the vision of the founders of the registry. Treatment is now possible for not only the resistant leukemias, but a host of other diseases - other cancers, and multiple hereditary or acquired bone marrow conditions.

Despite successfully coping with the unanticipated load, the program is not without its significant difficulties. Having been embedded in the National Blood Program ($300 + million budget), the UBMDR program (less than $3 million) struggles to maintain its identity and to maintain and advocate the special interest of its customers, patients and donors.

Problems that have plagued the program include:

  • failure to recognize Blood Services and UBMDR as distinctly different businesses.
  • UBMDR program staff reported to blood managers, who were often more concerned with blood program issues. This caused lack of cohesive teamwork, and lack of management focus to address customer concerns.
  • Inability of bone marrow program to respond to a dynamic marketplace.
  • Lack of uniform national standards in policy and operating procedures.
  • Cross subsidization between the blood program and UBMDR program.
  • Low staff morals and high turnover due to inconsistent inappropriate job classification.
  • Inadequate reinvestment in information systems, leading to threatening overload of computers.
  • Inability, due to lack of funding, to provide training and quality assurance.
  • Lack of consumer involvement.

However, not all is bleak. Due to the exceptional efforts of staff in the program, the UBMDR Advisory Committee was reconstituted in August 1996. Composed of significant stakeholders - transplant physicians, relatives of transplant patients, an ethicist, a donor, a DNA specialist, a business woman, and others representing both donor and patient advocates - the committee has set out to define and recreate a vision of the ideal program to respond to the customers’ needs.

The first act of the Advisory Committee as to recognize the need to shoot for the stars. Management Staff were charged with the responsibility to compose a business plan that would position the Registry to become among the best in the world. In-depth consultation with key personnel in the field revealed that there were five quality components essential to such a program.

  1. Donor commitment.
  2. Speed of the registry.
  3. Equality of access to the registry by both donors and patients.
  4. High resolution typing - quality laboratory standards.
  5. Product safety.

For the first time in its history, the essential nature of the program was defined. Unlike the blood program, which is essentially biological pharmaceutical/manufacturing-based, the UBMDR program is best described as a clinical - based, special DNA registry, sharing no common elements with blood. Thus, without the proper allowances for it to behave as a clinical-based business, unnecessary risk will accrue. For example , the regulatory environment currently being introduced in Blood Services threatens to be at odds with the guidelines/regulations being proposed for transplantation. Besides the requirement for a distinctive stream of quality assurance, there is the fact that the customers of UBMDR are not defined by geography. Donor to patient delivery of service is not provincially nor regionally bounded, and is not only national, but international as well. Management according to provincial or regional protocols, rather than national and international standards would detract from demanding logistical requirements and potentially jeopardize patient outcome.

A major defining characteristic of the program is that it is primarily volunteer driven. To make the program evenly accessible to its customers (ie: patients) the program must be able to reach out to Canadians no matter where they live. Just recently the Bruce Denniston Bone Marrow Society sponsored a recruitment campaign in Glace Bay, Cape Breton Island. This is an excellent example of one community, Powell River, B.C., reaching out to another community, Glace Bay, N.S. to build awareness and recruit donors for the National registry. The fact that both towns are coastal communities, and in their reach span of the vastness of this country, is testimony to the program being supported by a caring community on a National scale. Far from the registry being just a list of names on a data base, the UBMDR is a series of communities who have mobilized themselves to sponsor members of their societies into the registry. Attrition due to loss of interest is the greatest threat to a quality registry. Only by defining the registry in the context of community will ongoing support be ensured to keep donors interested and committed to their original inspiration of reaching out to help others.

So, in the wake of the blood debacle, if one were to ask the question , "In what new home should the UBMDR program reside?", the answer is clear: certainly, it must be removed from the shadow of blood. It must avoid becoming a government agency prone to bureaucracy. Rather, as a clinical and volunteer program it must remain close to its customers and responsive to their needs from coast to coast, as well as the needs of its international patients and donors.

The program must be able to encourage the development of affiliated technological advances by supporting research into Stem Cell and Cord Blood applications, which would supplement marrow transplant applications.

It is vital to recognize and enhance the natural linkages to other national organization such as The Candlelighters Childhood Cancer Foundation, The Leukemia Research Fund, The National Cancer Society, The Neutropenia Support Association Inc., the Canadian Blood and Marrow Transplant Group (of Transplant Physicians), and the many more stakeholders who have an interest in the development and maintenance of a first quality bone marrow transplant program. Only strong representation by these groups before Provincial and Federal Governments will ensure that Canada will have the best possible bone marrow registry program to serve the needs of Canadian patients and their donors, and those of our international customers.

Future possibilities of application of marrow and stem cell transplant technology are expanding exponentially. Research is proceeding at a whirlwind pace, with mind-boggling potential for treatment of immune system diseases and additional hereditary and malignant conditions. A strong, well-managed Registry, administered by a qualified, focused board under appropriate National standards is essential for Canadians to receive the full benefits possible from this unique technology.