Three themes commonly characterized the journeys of Canadians with MS who decided to leave the country in search of CCSVI therapy abroad. These individuals first experienced a loss of faith in the Canadian health system by virtue of their frustration with domestic health care providers and health system administrators who would not accommodate their desires to access unproven interventions at home. Following this loss of faith, these individuals nurtured hope that access to CCSVI treatment abroad could eliminate or lessen some of their symptoms of MS, though they were generally measured in their expectations. Once hope for better quality of life through travel abroad was established they finally embarked on their trips abroad, forming trust and through it confidence in the credentials and personalized service of their caregivers. Faith, hope, and trust were thus central to their decisions to ultimately go abroad and seek CCSVI treatment in another country as medical tourists. In the sub-sections that follow we examine these three thematic findings in depth.
The participants described a loss of faith with different aspects of the Canadian health system due to their inability to access CCSVI treatment at home. They felt their diagnosis with MS marked them out as different from the rest of the population and subject to inferior treatment. One participant referred to having the “scarlet letters of MS attached to my medical file.” Whereas the participants felt that other Canadians were able to access vascular treatments similar to those used for CCSVI for conditions not related to MS, their doctors told them that they could not apply these same interventions to treat their MS. As a result, one participant “didn’t have any hope” after his doctors explained that they “could lose their job if they even helped me because I have MS.” In this way, people with MS felt singled out in the public health care system: “you know they do this procedure on everyone else in Canada but they won’t treat MS patients. Anybody that’s previously labeled, we can’t have it.” This experience left one participant with the attitude that, “once you’re labeled with MS, good luck [with accessing care].” As a result, the participants felt that their treatment by the Canadian health care system was unfair when compared to the situation of other, similarly situated persons with vascular diseases not related to MS.
Blame for feelings of unfair treatment by the Canadian medical system was largely targeted at neurologists who serve as gatekeepers to specialized treatment. As a result of the perceived resistance of neurologists to the vascular-based CCSVI treatment, one participant voiced that he would not trust a neurologist “as far as I could throw one” and another mentioned “rage and a lot of anger” targeted at neurologists. This antagonism toward neurological specialists complicated care within the Canadian system for the participants. For example, one participant mentioned not visiting his neurologist before seeking care abroad because all “neurologists were against CCSVI.” This disengagement took place following CCSVI treatment abroad as well. One patient said that upon returning to Canada following treatment abroad, his neurologist “hasn’t talked to me, he hasn’t tried to contact me and I don’t see any reason why I should go see the man.” Some participants reported tension between the views of their family doctors and neurologists over the potential benefits of CCSVI treatment that created frustration. As a result, one participant described her experience of feeling stymied by her neurologist even when her family doctor was supportive of her accessing CCSVI: “[the family doctor’s] hands are tied. Because once again a neurologist has domain over my disease. Not even I have domain over my disease…it’s in the hands of the neurologists and that’s not fair.” Participants were particularly frustrated by their loss of faith in the Canadian medical establishment as they saw CCSVI treatment as a chance to address the root causes of MS rather than continue a cycle of symptom management.
Connected to this loss of faith in Canadian medical specialists, many participants felt a loss of faith in the Canadian health system as a whole and felt pushed into the health systems of other countries as medical tourists. This loss of faith took the form of a violation of the expectation that the Canadian health system would be responsive to their perceived health needs given a lifetime of supporting this system through their taxes and viewing the health system as an important part of their Canadian identity. For some, this experience led to feelings of abandonment, with one participant saying that: “when you’ve got MS you’re on your own.” Another noted that he felt as though “my country abandoned me,” saying that “there were actual signs on doctor’s offices that said if you are here to talk about CCSVI please leave.” In one case, the lack of access to CCSVI at home led a participant to develop an adversarial reaction toward Canadians generally: “your fellow Canadians would not let you have it at home. So you’re going elsewhere, that’s about all you need to know about your fellow Canadians. …at that point they are adversaries, they’re not working with you, they’re standing in your way.” In another case, the experience of having to become a medical tourist was described as “a slap in the face” by a Canadian health system in which she had had faith throughout her adult life. The financial costs of going abroad for care were another source of anger toward the Canadian health care system that would have paid for the intervention were it offered domestically in the public system: “I was very upset and disappointed that I had to basically spend $10,000…It just doesn’t make any sense and it’s not fair.” From the perspective of these participants, the Canadian health system should have provided access to an intervention that they hoped could address the root causes of MS at no additional cost to them. The refusal of specialists, health system administrators, and government officials to provide access to this intervention forced them to go abroad for care at significant personal cost, resulting in an overall loss of faith in the Canadian health system in addition to specific health care providers.
The participants regularly described their decision to travel abroad for an unproven medical intervention as driven by a range of emotions, but particularly as a result of hope for relief of the progressive decline in their health brought on by MS. As one participant described it, CCSVI was “our only hope at that time” and the care offered by local doctors did not provide “a lot of inspiration to carry on.” Hope for better health from CCSVI treatment was also discussed in terms of providing “positivity” and for bringing about a sense of excitement. For example, a participant described how hope combined with excitement shaped her interactions with the doctor she saw while abroad. This doctor “didn’t make any, any real promises he just had as much hope as I did and that was, it was nice, it was exciting, more than I had had in a long time.” While hope drove many to seek CCSVI treatment abroad, contrasting emotions such as fear were experienced as well, with one participant explaining that there was also “the fear of the unknown.” Despite some fear at the prospect of traveling abroad to access an unproven medical intervention, their new hope of arresting the progression of their MS was the dominant emotion driving participants’ decisions to become medical tourists.
Worsening health and the loss of quality of life brought on by MS was a significant factor driving participants abroad. This loss of quality of life was the key motivation for some who reported being “willing to do anything to have the quality of life that you want.” Given the progressive loss of quality of life and the perceived lack of effective treatments within Canada, seeking CCSVI treatment abroad was felt by some to be the only option for treatment, even if success was far from guaranteed. Despite this lack of guaranteed success, doing nothing was not seen as an option. For these participants, staying in Canada would be equivalent to accepting as permanent the loss of function from MS, and so any response was desirable. As one participant put it: “I knew what was going to happen to me if I did nothing. And so I was going to do something.” For others, not seeking treatment abroad would be the same as accepting death, thus making taking a chance on CCSVI treatment “a rational choice.” Due to the progressive nature of some forms of MS, many participants felt pressure to act quickly rather than wait for the possibility that CCSVI treatment would eventually be offered domestically. As one noted, “time works against you when you have MS, every day there is a little piece of you that seems to die off.” The natural progress of their disease and restrictions on access to CCSVI treatment at home, then, made the decision to go abroad for care seem clear and fully rational.
For the most part, the participants did not believe that they would be cured of MS as a result of undergoing CCSVI treatment abroad. Their measured hope was in some cases informed by the cautions of the physician providing the intervention. In one case, an international physician told a patient: ‘don’t go in expecting miracles. This is not a cure, this is symptom management.’ In another case, a patient did not receive the symptom relief that she most desired, but still saw an improvement in other areas. As a result, she reported that her “overall well-being has improved.” For another participant, symptom relief did not need to be permanent in order for the procedure to be deemed worthwhile: “if there was a chance that a person could alleviate the symptoms for even a little period of time. It’s worth it.” Some participants had their expectations around CCSVI treatment tempered by past experiences with unproven interventions, having previously been told of “quack remedies” or actually spending money on “trying for hope.”
While loss of faith in the Canadian health system and hope for improved health both motivated participants to travel abroad for care, they had to develop some form of trust in the specific clinics and physicians in the destination countries they visited. For some, the decision to go abroad for care was supported in part by peer support networks that participants had built up with others seeking, or who had sought already, CCSVI treatment abroad. Distrust of neurologists and the MS Society led one participant to focus on the recommendations of fellow people with MS because it “is our disease” and they are “banding together.” Within online groups, the fact that people who had already gone abroad had “firsthand knowledge” of the intervention was seen as important. Online groups on Facebook became (and continue to be) trusted sources of information for some participants, with one noting that “we were able to go to this [Facebook] group and find all of these good places and bad places to go to get it done” and another likening Facebook to the “underground railroad.” Many participants found confidence in their own research, trusting themselves to determine which sources of information were most reliable. One noted how seriously she had researched CCSVI treatment and the clinics abroad, saying: “I don’t just go off on a song and a prayer, I actually research things and then I make a decision.” In all of these cases, the participants we spoke with became heavily reliant on their own networks, both face-to-face and virtual, and online information when determining where to travel for care and which physicians and clinics to place their trust in.
While most participants had lost faith in the Canadian medical system and especially the neurologists treating them, the professionalism and credentials of their physicians abroad remained an important element in building trust in the care they would receive. This process of trust building took place in a context where several participants discussed having read media reports of Canadians suffering significant negative health impacts from accessing CCSVI treatment abroad. In one case, a participant noted that her physician abroad was “actively researching” new MS treatments and saved the life of another patient while she was in the facility. Another took pictures of the plaques and credentials on the wall of the waiting room in the facility, noting “a huge wall full of certificates.” Many participants felt able to assess the credentials of their physicians abroad prior to travel, often with assistance from online information and their support networks. Phrases used to assess these credentials included “board certified” and “experts,” with one participant noting that she “trusted the qualifications that they said these people had.” The opinions of physicians back home also served to instill confidence in physicians abroad. In one case, a participant asked her regular family physician about the credentials of her prospective physicians in India and was told that they would have been educated in the United Kingdom and so their training would be similar to that of Canadian doctors. The ability to communicate with physicians abroad prior to booking CCSVI treatment was also important to building confidence in the quality of care they would receive, and trust in these physicians. After she spoke with her international physician over the phone, one participant noted that: “I felt very, very confident.” However, for a minority of these participants, trust in professionalism was more of a leap of faith based on “faith and trust” that the physician was looking out for their best interests rather than being based on degrees and other qualifications.
The interviews revealed that participants not only needed to trust the physicians from whom they received CCSVI treatment, but also that they needed to form a certain degree of trust that their health and safety were secure in the destination country and clinic as well. In some cases, participants were already familiar with the international health systems being accessed, with one choosing a destination based on having been born there and having other family connections to that country. Another participant felt comfortable traveling to Poland as that country had joined the European Union and adopted Western medical standards, which he trusted as a quality indicator. Some participants were initially concerned about the quality of care and facilities abroad. One participant traveling to Bulgaria was reassured that the hospital had been built and funded by Japan. Another participant had heard “weird things about Mexico” and was worried that she would find “a dirty stable” instead of a hospital. She was ultimately reassured by the appearance of cleanliness of the facility and that “nurses down there, they’re dressed like nurses with white caps on and starch white gowns.” In other cases, participants felt that the standard of care they received abroad was superior to that experienced in Canada, which enhanced their trust in clinics abroad. One patient noted her physician abroad “spent probably forty-five minutes to an hour on the phone with me. I don’t even get forty-five minutes to an hour with my doctor here in Canada.”