The N.S. Environmental
By Cathy McDonald
It’s official! Nova Scotia will soon have the only government-funded clinic in the world for the treatment of environmental hypersensitivities and related illnesses. The new million-dollar Environmental Health Clinic will be fulltime and permanent, and is the successor to Dr. Ross’s part-time N.S. Environmental Medicine Clinic at the Victoria General Hospital.
As announced Nov. 1 by Dalhousie’s dean of medicine Dr. John Ruedy, the Dalhousie-run clinic’s mandate is for research, treatment and education. In initiating and now expanding this project, the Nova Scotia government and medical community have been called pioneering, trail-blazing. Why here? Why are we so fortunate?
Here’s a rough history, from the perspective of a patient and A.E.H.A. volunteer.
Long before I fell ill or had even heard of environmental sensitivities, afflicted individuals in Nova Scotia were struggling to cope with this condition. There were no local medical resources to help them. I’ve greatly admired the people I’ve met from this period for their strong-minded independence. They put up with specialists who were dismissive and patronizing and sought help from complementary health practitioners and books. Those who could afford it made repeated trips to Ontario to see a clinical ecologist - a physician specializing in the treatment of the environmental illness. (They are now called environmental medicine specialists.)
In 1985 a group of afflicted individuals formed the Allergy and Environmental Sensitivity Society (A.E.S.S.) for self-help. The first meetings were held by conference calls since no one was well enough to leave their home for a meeting.
International E.I. experts speak in N.S.
In 1986 the A.E.S.S. arranged for a series of environmental medicine physicians and other specialists to come to Halifax to speak. Speakers included Dr. William Rae, Director of the Environmental Health Center in Dallas, Texas, the most prominent private clinic in the U.S. Dr. John MacLennan, Canada’s first and longest practising environmental physician from Dundas, Ontario, and Dr. Jean Munro, Head of the Environmental Care Unit, Nightingale Hospital in London, England, also visited and spoke.
A.E.S.S. members were inspired to hear that environmental medicine spoke to their experience of illness. The physicians spoke of how the increasing chemical load on our bodies, combined with poor quality of diet, stress and other factors was causing chemical sensitivities in a far greater proportion of the population. They described a holistic approach to treatment: stressing clean air, food and water and nutritional support, ahead of the medication of separate body symptoms. This validated members’ experience of successful treatment. As then-executive member Marion Fraser said, “We were very excited. We knew the knowledge was out there, but we needed it here”.
The A.E.S.S. pressed the government to pay for out-of-province treatment. Limited success was achieved when four very ill individuals received financial help for treatment in Dallas.
In July, 1987, the A.E.S.S. dissolved itself and joined a national support group - the Human Ecology Foundation. This is now called the Allergy and Environmental Health Association.
Controversy among medical groups over the acceptance of environmental hypersensitivities as a valid diagnosis, was preventing forward motion on research, treatment and support services.
A significant step forward occurred with an Ontario Ministry of Health inquiry, headed by Judge George Thompson. This reported in 1985 that “the diagnosis of environmental hypersensitivity has validity”. In addition to the facts that led to this decision, the inquiry was impressed by the sheer volume of personal testimonies of the devastating effects of this condition.
Dr. Beresford takes a stand
The Nova Scotia government set up the Langley Commission to study the issue in 1986. They reported in 1987 that there is “no scientific evidence” that environmental hypersensitivity exists. Panel member Dr. Patricia Beresford issued a strong minority report stating that this illness does exist and is a very serious problem. She recommended that any further investigation should include the expertise of a clinical ecologist and a nutritionist.
The A.E.H.A. supported Dr. Beresford’s report, and made this issue and the relevant concerns public through press and media interviews.
It was realized that talking to panels of medical experts was not enough. The A.E.H.A. would have to educate politicians about their needs. In March, 1988, the executive agreed to focus its energy on working to obtain the services of a doctor in Nova Scotia to treat chemically sensitive patients.
Previous to this, Dr. Gerald Ross was a GP practising in New Minas. He had been seriously ill since 1982 and at times hospitalized. His colleagues could not find the source of the problem and he was facing the loss of his practice. He eventually sought answers from physicians in the field of environmental medicine and went to the Dallas Clinic in 1986. Dr. Ross was diagnosed with environmental illness. It was linked to an exposure to dry cleaning fluid in the town’s drinking water. With treatment his health improved remarkably. From a skeptic about environmental medicine’s usefulness, Dr. Ross became a believer and changed his career path.
At Dr. Ross’s request, in 1987, the Department of Health (DOH) gave financial support for his treatment and provided him with a partial fellowship for two years study at the Dallas Clinic and in London, England.
At roughly the same time, Health Minister David Nantes established the “Nova Scotia Committee to Study the Adverse Effects of the Environment on Health”, chaired by Dr. Kempton Hayes. The committee set out to screen and interview 100 patients who claimed to have environmental hypersensitivity in order to determine the best treatment for them.
The A.E.H.A. was very pleased with this support for Dr. Ross, and cautious concerning the Hayes study. Patients were encouraged by the A.E.H.A. to participate in the study. It was believed that a balanced study would have to include a referral to an environmental medicine specialist which would benefit the patient.
But by the summer of 1989 the Committee’s biases became clear. There would be no referrals to environmental medicine physicians because “we have not been able to find credible scientific evidence of the safety or efficacy of diagnostic and treatment methods of [environmental medicine practitioners]”.
In July, 1989, the A.E.H.A. withdrew its support of the Hayes study, claiming bias. It was suggested that patients withdraw their cooperation. As a result eleven patients dropped out.
A.E.H.A. campaign to bring Dr. Ross to N.S.
The A.E.H.A. continued to talk to officials at the Department of Health and to hope for the return to Nova Scotia of Dr. Ross, who now held a staff position at the Environmental Health Center in Dallas.
In the summer of 1989 negotiations between the DOH and Dr. Ross for a full-time position in Nova Scotia reached a stalemate. Environmental medicine was not recognized in Canada as a medical specialty. In Nova Scotia there was a lack of acceptance in certain medical groups of Dr. Ross’s work and of the value of an environmental medicine practice. The proposal made would not enable Dr. Ross to conduct a practice which would meet his professional standards and could not offer sufficient incentive to Dr. Ross to uproot his growing family and come back to what would be an uncertain future in Nova Scotia. As it stood, Dr. Ross would not be returning.
The A.E.H.A. was alarmed and launched its most heartfelt, all-out campaign to lobby the DOH to bring Dr. Ross here. Members circulated petitions, wrote letters and gave media interviews.
A.E.H.A. president Carol MacKinnon organized the campaign and chaired meetings with the Department of the Health. Sheila Cole was on the A.E.H.A. negotiating team. She remembers: “They received more than a hundred letters. They thought we were a really big organization. In negotiations, Department of Health officials tried to get us to soft-pedal our approach, but we insisted that patients were in need and those needs must be addressed”.
Finally, a proposal from Dr. Ross was approved for a part-time, visiting clinic on a trial basis. This would include testing and IV services. Sheila says: “It is to the government’s credit that despite all the medical controversy they supported the pilot project - the first of its kind in the entire world. The A.E.H.A. deserves a lot of credit in achieving this”.
The DOH contracted with the Environmental Health Center in Dallas to provide the services of Dr. Ross and one testing technician. Locally, an IV nurse and secretary were hired for each clinic session. In between clinics, Dr. Beresford’s office handled phone calls and appointments. This scheduling was a time-consuming job, which involved considerable interruption in her own office’s functioning.
It was a landmark decision! The project would allow the government and the local medical community to observe and evaluate the new practice of clinic ecology. For patients it meant access to this treatment, albeit not the full-time service for which they had hopes.
The clinic set up in the Victoria General’s Nurses’ residence in five relatively safe rooms at the end of a long hall shared with male residents. With Dr. Ross as medical director, the N.S. Environmental Medicine Clinic opened its doors quietly in September 1990, with no official announcement to the media or to any physicians of this new service.
The first clinic session
I was at the first clinic on the second day, not knowing much about its history or about environmental sensitivities. Things were a bit confused with many, including myself, mistaking the testing room for the waiting room. I don’t remember my appointment with Dr. Ross very well except that I came out feeling hopeful yet dubious that my symptoms could be due in part to reactions to my environment.
The next day I started testing - a miserable yet eye-opening experience! Betty Bruce was our first tester, greeting us with her strong Texas accent. Betty has worked at every clinic since, always keeping an eye on 15 dopey, suffering patients while deftly handling her needles and vials.
While testing I saw people of all walks of life developing a wide variety of symptoms, such as: red face, nausea, light-headedness, aggressive talk, feeling “beaten up”, even passing out! These symptoms came and went in other people, but I knew it wouldn’t work for me. I was amazed, then, when Betty found the histamine dose that made my sore throat get better!
We tested every day at the clinic. I was dismayed to discover I had a lot of food sensitivities and had to go on a rotation diet. But I was glad to meet other people and hear their stories.
At subsequent clinics a spirit of camaraderie developed. The testing room filled the role of support group - getting information one day and passing it on the next. But new patients continued to be bewildered. What was the purpose of testing? Why do we take antigens? People are lying on stretchers getting IVs - are they desperately ill?
Patient volunteers pitch in
From day one the demand for the clinic’s services was very high. The staff worked hard - some estimate the Dallas personnel worked 30 per cent more hours than was agreed to in their contract. Cramped conditions, high turnover of secretaries and information overload for new patients didn’t help matters.
The clinic was obviously trying to do a lot with very little. As a result a necessary and special feature began to develop - the close cooperation between clinic staff, patient volunteers and the A.E.H.A.
At first, volunteers organized newcomers into antigen ordering groups, wrote information sheets and maintained a bulletin board. The A.E.H.A. invited Dr. Ross to give talks, and sold copies of “Bon Appetit”, the rotation diet book and the “Outpatient Manual”, both from Dallas.
Soon volunteers became an integral part of the clinic, and now contribute an average of 60 hours per week. During clinic sessions two or three are always at hand - filing, photocopying, keeping statistics, answering the phone or counseling new patients. In between sessions they book appointments, and contribute special skills such as computer programming, producing patient information kits or running a support group (during 1991/92). Projects independent of the clinic started up, such as small self-help groups, and an A.E.H.A. project to lobby for treatment coverage for patients on social assistance.
Isabella Rohrer von Carlowitz became the IV nurse at the third clinic in January, 1991. She increased the number of IVs given from 18 to more than 100 per clinic. These intravenous infusions of vitamins and minerals give energy and symptom relief to many patients. To accommodate the many IVs, Isabella set up cots and IV poles in the hall. A newcomer could get quite a shock at the overall effect which MITV once described as “a scene from MASH”.
The IVs were one of Dr. Ross’s new and unfamiliar treatments, one that many of us found very helpful. It was frustrating to feel a boost form an IV at one clinic, then go downhill for two months until the next. We wrote letters and pressed the Department of Health to provide weekly IVs. As months passed with no results, Isabella gave some of us IVs at home. The effects were very beneficial, and now many physicians prescribe home IVs for their patients who can afford them.
Tangible recognition of the efficacy of IVs came in September, 1991, when Camp Hill Hospital in cooperation with the Department of Health, began a weekly IV program for selected patients, that continues today.
Ardyth Robinson joined the clinic staff as secretary - later coordinator - in August 1991, ending a long cycle of secretary turnover. Ardyth brought greater efficiency, a warm patient-oriented management approach and a more sophisticated public image to the clinic. Ardyth affirmed the importance of patient input into clinic issues - through the A.E.H.A, as volunteers and through a formal patient-advisory committee.
Ardyth remembers two highlights for her in the internal life of the clinic - the 1992 Christmas party and the January 1994 “Tribute to Dr. Ross” roast and New Year’s party. Both were volunteer-run, gala events for patients, staff, guests and friends of the clinic, held in the Bethune Building ballroom. Ardyth said ”they were the only social events especially geared to people with environmental sensitivities - some of whom hadn’t been out in 3-4 years. It created spirit, bringing people together, recognizing what we have and being thankful for it”.
Also important to the clinic’s success were John Malcolm and Dr. Henry Bland, the two DOH officials chiefly responsible for overseeing the clinic’s early development, providing guidance and support.
The clinic is Dr. Ross
The essence of the clinic has always been Dr. Ross. Patients I know have always spoken very highly of Dr. Ross. From the moment you enter his office and he shakes your hand you feel his respect for you as a person. His unique approach to patient care is to validate the patient’s experience and to give the patient control over their illness. Dr. Ross helps them “sleuth out” what exposures are affecting their health and provide information they need to control their environment to the greatest extent possible. Patients appreciate his humor, and his concern for their emotional well-being.
Dr. Ross has worked endlessly for patients and the clinic, at great sacrifice to this family and health. As well as long hours at the clinic, he has never turned down an invitation to speak to physicians, A.E.H.A. meetings, schools, the Department of Health and other agencies. He was interviewed for countless press articles, and radio and TV programs both local and national. Dr. Ross is an impressive speaker, giving highly logical and lucid explanations of chemical sensitivity. He is a true diplomat, addressing skeptics and opponents calmly and with respect.
Dr. Ross has been an invited speaker at medical seminars in the U.S., Canada and internationally. He is an advisor to the environmental illness research clinic at Women’s College Hospital in Toronto, and sits on numerous government committees. Dr. Ross has recently been nominated as president-elect for the American Academy of Environmental Medicine.
Dr. Ross’s rational and calm demeanor belies his drive and deeply held beliefs in a new paradigm of patient care, and his vision that Nova Scotia could play a leading role in promoting environmental medicine.
Despite the help patients were receiving, as a pilot project the clinic’s future was always in question. The A.E.H.A. kept up a fairly steady letter-writing campaign to the DOH, expressing appreciation for the clinic and seeking an expansion to permanent, full-time status.
I remember thinking the every-other-month schedule was absolutely intolerable. The clinic was helping so many, it was wrong to deny this necessary service to all those on the waiting list!
By June of 1991 the DOH began its evaluation. The next 100 new patients would fill out a questionnaire before testing and a follow-up survey after a year of treatment. The surveys, developed with help from the A.E.H.A. (Robin Barrett) and Dr. Beresford, were designed to indicate what treatments were used and what improvement in symptoms, if any, took place.
The DOH made a few concessions to the pressures on the clinic during that first year. They extended the secretary’s hours and added a second Dallas tester. But by year number two the word was “no more expansion until the clinic’s evaluation has been completed”.
By July of 1992 the waiting list had
grown to 300 - representing a three-year wait. The A.E.H.A. began
circulating a petition, which collected 3300 signatures from all over Nova
Scotia for a full-time clinic. As A.E.H.A. president, Robin Barrett
helped maintain the A.E.H.A.’s strong presence in representing members’
needs. Communicating well with politicians and the DOH while “keeping
up the pressure” with letters, petitions and press conferences, the A.E.H.A.
gained respect and visibility.
Camp Hill workers fall ill
The situation at Camp Hill Veteran’s Memorial Hospital was drawing more attention. What began as skin rashes affecting kitchen workers in 1989, had by 1992 seriously impaired hundreds of workers. The problem was traced to faulty ventilation and chemical contaminants. As many as 600 employees reported symptoms, and 160 were on sick leave at any one time.
One afflicted worker was geriatric specialist Dr. Roy Fox. Since 1988 he had experienced rashes, extreme fatigue, vertigo, poor concentration and memory loss, and was no longer able to work. In December 1991, Dr. Fox and others began a support group for afflicted Camp Hill workers. Many heard for the first time from Dr. Fox about environmental hypersensitivity and began to learn ways to help themselves.
The ill Camp Hill workers were not improving despite being off work. In August of 1992, Camp Hill administrators asked Dr. Ross to evaluate 24 workers. He described their condition as very serious. A few Camp Hill victims had become patients of Dr. Ross, and may were on the waiting list.
In October 1992 the DOH sponsored Dr. Fox for a year of treatment and study at the Environmental Health Center in Dallas, to later become a consultant and resource to the department.
Meanwhile the Camp Hill workers were getting frustrated, desperate and vocal. The administration’s attention was on how to fix the sick building, but still there was limited access to treatment for the sick workers! Six anonymous workers spoke in depth to a Chronicle-Herald reporter, and a group of 60 workers formed an advocacy group and hired a lawyer.
Hayes reports says E.I. doesn’t exist
On November 21 Dr. Kempton Hayes dropped his bombshell. He went public with his physician-committee’s very negative report on the validity of the environmental hypersensitivity diagnosis. The report claimed that 86 individuals screened who thought they had “environmental hypersensitivity” actually have standard problems such as allergies and migraine, and 40 per cent have somotization disorder - a psychiatric problem. These patients could be helped by standard treatment, the report said, but alternative therapies such as the Environmental Medicine Clinic was keeping them from getting this treatment.
Dr. Hayes said some therapies offered by environmental medicine practitioners are only successful because of the placebo effect. It was stated that the treatments are not based on scientifically sound evidence and those who prescribe them are “intellectually dishonest”.
We were stunned! It is always hurtful when physicians deny the validity of an illness which is such as obvious and painful reality every day of our lives. But this was a deliberate, calculated attack on Dr. Ross and the clinic’s work.
We had known from past indications that the Hayes report would be negative. However, Hayes’ timing was provocative and put us at a disadvantage. The report had actually been finished the previous March and the DOH has decided not to make it public. The department decided to withhold it until its own evaluation of the Clinic was ready, which we expected to be positive.
The effect of this damaging publicity was to galvanize angry patient support groups into action. Three days after the Hayes article appeared a joint press conference was held at Veith House with the A.E.H.A., Citizen’s for Choice, a lawyer representing the Camp Hill environmental victim’s society and Dr. Fox. A hundred supporters attended, mostly from Camp Hill.
We questioned Dr. Hayes’ motives in releasing his report unilaterally. It was pointed out that the report itself was really only a hypothesis, with no follow-up or proof that “standard medical treatments” would in fact be helpful to the 86 patients. Dr. Fox questioned the report’s methodology and incomplete review of the scientific literature which “identifies environmental hypersensitivity as a real problem worthy of further study”.
We received excellent TV coverage. Subsequently the media thoroughly questioned Dr. Hayes and gave good opportunity for Dr. Ross to respond. Dr. Ross pointed to the growing number of institutions recognizing environmental hypersensitivity, including the federal Department of Health and Welfare and the U.S. Department of the Environment.
The most effective counter to the report, I felt, was the reality of the large number of sick Camp Hill workers, whom everyone could see did not have a “standard Illness”. I believe that in the eyes of many physicians that Dr. Hayes was discredited.
Patient groups form lobbying strategy
Fresh from our media success, patient groups formed a coalition to coordinate lobbying in support of the clinic. We wanted to draw attention, not to the illness, but rather to the positive results of the clinic’s treatment program. A sub-committee researched and wrote its own proposal for a full-time, full-service clinic with IVs, testing, sauna, a new safe location, counseling, a nutritionist, and treatment coverage for patients on social assistance.
On November 25, coalition representatives (which now included the Back to Basics Allergy Support Group and the Nova Scotia Nurses’ Union), presented this proposal plus the 3300 signature petition to Health Minister George Moody and then to John Savage’s Liberal opposition caucus. This was followed by an emotional press conference at Veith House, packed with 300 supporters, including Alexa McDonough. Three patients told their stories of recovery from major illness.
Media coverage was excellent. Health Minister George Moody said he appreciated this patient input, but was waiting for the results of the DOH evaluation before deciding the clinic’s future.
What followed that winter of 1992/93, as a result of our efforts, was an intense media interest in sick buildings and environmental illness.
The Camp Hill workers were vocal and well-organized. They picketed at the Worker’s Compensation building and marched on the legislature, demanding recognition of their illness, access to the clinic’s services and coverage of treatment costs. Not a week went by without our hearing about sick hospitals, sick schools, a sick courthouse, scent-free policies at hospitals, healthy homes, seeing people wearing masks for protection, getting tested, getting IVs, and so on. I believe we reached a turning point in public awareness of these issues at this time.
Despite all this attention, the clinic’s status remained unchanged. The contract with Dallas had expired in August 1992, but the DOH’s evaluation kept being delayed. Finally in the spring of 1993 it was completed, but not made public! The A.E.H.A. said nothing - the board members had spent their energies and an almost all-new board was elected.
The Tory government lost the 1993 fall election to the Liberals. More uncertainty and delay followed. We were starting all over the Premier John Savage and Health Minister Ron Stewart at a time when health reform and health care cutbacks were taking place.
Powerful committee proposes new agency
I believe that Savage was initially very cool towards the clinic’s work. What really saved the idea of a full-time clinic was the work of an important behind-the-scenes committee initiated by Camp Hill worker Marie Welton and medical school dean Dr. John Ruedy in early 1993.
The “Environmental Irritant Syndrome Committee” membership has changed since its beginning, but essentially has been led by Dean Ruedy. Members include four women representing afflicted Camp Hill workers, physicians with a vested interest in the Camp Hill problem (such as from Worker’s Compensation, Department of Health, N.S. Medical Society, Provincial Health Council, Council of Teaching Hospitals), a naturopath and relevant Dalhousie faculty members.
The committee’s initial goal, Marie said, was “to find appropriate treatment” for the Camp Hill workers. Soon the committee decided that a necessary first step was research to establish acceptable diagnostic criteria for the illness.
The four Camp Hill workers pressed hard to keep their needs foremost in the committee’s mind, so that any research proposal would not cause delay in the provision of treatment services. According to committee member and Camp Hill employee Elaine Nepjuk, “We stressed the lack of knowledge (about chemical sensitivities) among physicians. The waiting list at the clinic is too long and we can’t get help from our family physicians”.
A strong consensus developed among committee members and led to the “White Paper”, a proposal for an agency to take a leadership role in research, treatment and in promoting physician and public education concerning environmental sensitivities. The paper emphasized the need for prevention, and early recognition and treatment of the illnesses.
The White Paper was presented to the Premier and Health Minister in September, 1993, and was favorably received.
Dean Ruedy’s support was key to the establishment of a full-time clinic. He said in November, 1993, “medicine has to be in the front line. We can’t just do things that are comfortable for us to do”.
Between the DOH and Dean Ruedy, a plan took shape to establish a Dalhousie-run clinic to address the goals of the White Paper. As a treatment centre the clinic would also take over and expand on the work of the Nova Scotia Environmental Medicine Clinic, with its current patient and waiting list of 800.
A year later, after sporadic announcements and much waiting, the new “Dalhousie Environmental Health Clinic” is about to become a reality. The clinic will be located in Fall River with renovations due to completion in April 1995. It will boast a state-of-the-art air handling system and meet high environmental standards.
Dr. Roy Fox is Interim Director and is now seeing patients in his nearby Fall River office. Dr. Fox has specialty training in internal medicine, gastroenterology, hepatology, immunology, geriatrics and environmental medicine. He was Head of Geriatrics Division and Director of Centre of Health Care of the Elderly at Camp Hill Medical Centre for seven years. Dr. Fox is a Dalhousie faculty member and is highly respected for his research in many fields. Dr. Fox is warm and personable and we are very fortunate to have him as director and physician.
The research director is Dr. Michel Joffres, a medical physician and epidemiologist from Alberta.
Dr. Ross is not on staff which is a great disappointment. Patients wrote letters all summer long asking for Dr. Ross’s inclusion, but without success. Dr. Ross has made a huge contribution to the clinic and its patients. We hope he will be given a role in the future so we don’t lose the benefit of his tremendous experience and talents.
Great hopes for a new clinic
We have great hopes and expectations for this new clinic, and have much to be grateful for. The government has put up a million dollars at a time of health care cutbacks. The powerful Dalhousie School of Medicine has full confidence in its ability to attract research funds. Dalhousie and the Nova Scotia government are to be congratulated for taking this step, placing themselves in a leading position in the field.
Why has this happened in Nova Scotia? There are many reasons and what goes on in government and medical circles is largely hidden from us. We know that the tragedy at Camp Hill is an example of environmental illness on a large scale that could not be ignored. And we have had in Dr. Ross an expert to explain the illness and demonstrate effective treatment. We have many friends among physicians, politicians and DOH officials. But we should also remember that every step forward has been accompanied by determined, outspoken patients demanding this treatment and making it a public issue. The A.E.H.A. has been a key player from the start, with the Camp Hill workers carrying the flag in the last two years.
I sincerely hope the A.E.H.A. will make strong representations of patients’ needs in the weeks and months ahead as the clinic’s format takes shape.
We have achieved a lot, but at a high cost in the years of suffering by patients waiting and hoping for treatment, and in the loss of Dr. Ross.
Cathy McDonald was one
of the principle people who was active from the beginning in getting the
clinic established and kindly agreed to produce this article.