The Canadian Hemochromatosis Society, which was started in Victoria by Marie Warder, now has its headquarters in Richmond, British Columbia. Here the society, which was founded in 1980 and incorporated in 1982, maintains a central register of all known victims and their families. The CHS has established a database and publishes a newsletter which goes out to doctors and patients as far afield as Hong Kong, South Africa, Israel and the United Kingdom. The society is happy to include in its questionnaires, specific questions to aid researchers; and it assists families, especially with respect to screening, the correct tests and where to seek treatment. The medical advisers of the CHS are available to both professional and lay members. Although so much has been published in medical literature, the society – which has representatives in most provinces of Canada, and members in sixteen countries – was obliged to research and produce the first patient literature on the subject available to the public in several countries.
The Canadian Hemochromatosis Society is a registered charity. Until very recently it was operated entirely by volunteers and it still is obliged to rely heavily on donations for its continued existence. Hundreds of requests for information and teaching aids are received by the CHS each year; from universities, patients and doctors; from libraries and hospitals (including such prestigious establishments as the New York City Health and Hospitals Corporation), stretching the slender resources of the society to the limit and contributing to the heavy workload of a handful of willing and dedicated people.
Each year since 2007, May 1-31 is observed as HHC Awareness Month. Prior to 2007, May 25-31 was observed yearly as Awareness Week. 523 new diagnoses can be directly attributed to the efforts of CHS volunteers during the first week of awareness, proclaimed in 1987 by the mayors of most Canadian cities and by the Government of British Columbia. In some families two, three or more – in one case nine affected members – were subsequently found. There must be hundreds of whom the society will never know. It is believed that in finding one person, there is the hope of saving an entire family.
The CHS is proud to be able to report that all provinces – and some countries – now observe Awareness Month and all Canadian Ministries of Health have become interested in HHC. In 1991, referring to the “strategy adopted by the British Columbia Ministry of Health to provide information about Hemochromatosis to physicians and pharmacists practising in that province”, Quebec’s Minister of Health informed the society that the Communications Branch of Quebec was revising and would ratify the French-language translation submitted by the Hemochromatosis Society. This text, adapted to meet the specific needs of Quebec’s French-speaking population, was placed at the society’s disposal for the benefit of interested Francophones in other provinces. It was good news indeed to learn that a second “bilingual” province was to become actively involved; to be assured, as the Hon. Marc-Yvan Cote of Quebec describes it, “of the intention to collaborate in the efforts to prevent Hemochromatosis throughout Canada.” A year later, when the province of New Brunswick issued a proclamation for the first time, the CHS had reason indeed to be grateful for the French translation provided by Quebec.
In 1990, to coincide with Awareness90, the Government of British Columbia assisted the society in the production of a special brochure – based upon text provided by the CHS – which was mailed by the BC Ministry of Health to every physician in the province. The society was made a gift of the unused copies – three thousand of which were distributed by the College of Pharmacists of British Columbia to registered pharmacists and that year’s graduates. In addition, both the Faculty of Pharmaceutical Sciences and the Faculty of Food Sciences arranged lectures on iron overload at the University of British Columbia.
Acting on briefs presented by the CHS, the College of Pharmacists had sent a letter to the Bureau of Non-Prescription Drugs of the Federal Health Protection Branch, the previous year, calling for “additional labelling on iron-containing products”. This was supported by the British Columbia Health Ministry. As a result misleading labelling such as “contains reduced iron” on food packaging is no longer permitted, and the possibility of mandatory warning labels on non-prescription products containing remains under review.
The society will continue to work towards the day when every province, supported by Health and Welfare Canada, has a program in place to educate physicians and inform the public; thus saving, not only millions of dollars which needs to be spent on the ongoing treatment of the complications of HHC – the end result of a perfectly preventable condition – but also the needless suffering of those who suffer and die as a result of the abysmal ignorance surrounding the disorder. Perhaps when tests for iron overload become a routine procedure and family physicians are better informed – so that all family members and individuals in high-risk groups (among them those suffering from diabetes, liver problems, sexual dysfunction and arthritis) are screened – there may be no need for the Canadian Hemochromatosis Society to continue its operations.
Another milestone was reached when, after twelve years of lobbying by the founder of the CHS, the Red Cross protocol regarding blood donation for transfusion was amended, allowing for the use of blood obtained by venesection from patients who met the required criteria and who could produce a letter from their physicians attesting to this fact. As recently as January 2001, an even greater step was taken when the society entered into a partnership with the Canadian Blood Services.
The society has been mentioned in several official reports, has participated in a number of health care surveys and has provided assistance to members of the International Association of Haemochromatosis Societies. Most gratifying acknowledgements have come from many sources, among them one from the doctors involved in the screening program undertaken at the Health Sciences Centre, St. John’s, Newfoundland, and published in Vol.2 No.4 (Nov. 1988) of Clinical Gastroenterology under the heading of: “Should children of patients with Hemochromatosis be screened for the disease?” (MacIntosh, Bear, Simpson, Komusi and Barrowman).
In a letter to the founder of the CHS, Professor Clement Finch of Seattle – a world-renowned authority on iron overload – writes: “Your society is doing a remarkable job in educating people and physicians about a disease I have been interested in for many years…. Our ultimate goal should be the institution of Transferrin Saturation and Ferritin Tests in routine screening profiles. Since the genetic disorder gives no clue as to its presence for many years, the only way we can diagnose the disorder (unless a member of the family has already been diagnosed) before damage is done, is to include these tests in the standard blood profile done on all individuals having blood tests. Perhaps your efforts will ultimately lead to this.”
The CHS certainly hopes they will. Its volunteers will never stop trying – and perhaps there is already a glimmer of hope. A press release issued by Health and Welfare Canada in June, 1991, contains the following, heartening statement:
“Hemochromatosis is now considered Canada’s most common genetic disease and routine blood tests for the disease may soon become standard diagnostic procedure.”
“A strong case can be made for incorporating measurements of the plasma iron, iron-binding capacity and ferritin into the routine blood screen,” says the Professor of Medicine Emeritus of the University of Washington in an editorial in the September 1990 issue of the Western Journal of Medicine. “Without such a survey, there is little hope of recognizing Hemochromatosis at a time when treatment has the greatest promise.” In the same editorial Professor Finch notes: “Lay societies have been formed whose mission is to disseminate information about the ‘bronze killer’…. Their information program is so effective that the people they reach are sometimes far better informed than their physicians.”
As the culmination of years of dedication and effort on the part of the CHS, Canada’s first Hemochromatosis Clinic opened in Vancouver on January 9, 1991, at University Hospital, Shaughnessy Site and it was a bitter blow when the closure of the hospital brought an end to a clinic which had attracted world-wide attention in medical circles.
During the years which have elapsed since radio and television publicity sparked inquiries from doctors and patients not resident in Canada, and brought the CHS its first foreign members, the society has been responsible for – or has assisted in – the establishment of similar, affiliated organizations in several other countries; thus becoming the founding member of the International Association of Haemochromatosis Societies. All such fledgling organizations were monitored by the CHS (in addition to its own, local operations) from its headquarters in Richmond, British Columbia, until they became autonomous – at which time their records were transferred to them.
A copy of data accumulated during the “protectorate” period was retained by the CHS, with the object of making available to researchers a valuable resource; one which would provide a wider view of the problem, its treatment and related problems than is possible when research is limited to one area. Among those societies which remain affiliated although long since able to operate on their own, are the Haemochromatosis Society in the United Kingdom and the Haemochromatosis Society of South Africa.
For many years the International Association of Haemochromatosis Societies was fortunate to have representatives in several countries, including France, Zimbabwe, Botswana, New Zealand and some states of the USA. The mandate of the representatives was to promote awareness and disseminate information, but not to obtrude in any way where other organized groups might possibly already exist. They were to endeavour to make contact with, and to co-operate with such groups, as the objectives of hemochromatosis associations are, after all, the same: to achieve timely diagnosis for those at risk and to assist those already afflicted.
The Need for Continued Cooperation
Because genetic disorders recognize no boundaries, one of the first projects to be undertaken by those representatives was to assist in the compilation of a directory of established hemochromatosis societies (both affiliated and non-affiliated) throughout the world, in order to co-ordinate family-screening. There is still a great need for such co-ordination in countries with large immigrant populations like that of Canada; a growing need which has to be met urgently; a need which exists wherever there are victims of HHC with undiagnosed relatives in their country of origin.
Fortunately, the Internet and co-operation between the many and various hemochromatosis organizations which have since been established, has filled the need for an international directory. It is hoped that, in time, a network will exist to assist victims of HHC everywhere – perhaps even to aid tourists and individuals who travel extensively and routinely (e.g. airline personnel) in continuing phlebotomy therapy away from home.