On this week’s episode of Union Matters, guest host Mary Otto (President of Local 43 and member of NSGEU’s Political Action Committee) interviews Bill Swan about health care and Pharmacare advocacy. Bill Swan authors a website called the Faces of Pharmacare that chronicles real stories of Canadians as they struggle with the costs of the drugs they need to keep themselves healthy.
Hi and welcome to the NSGEU podcast Union Matters. My name is Mary Otto and I’m going to be your host today. Today I have with me Bill Swan who is the founder of Faces of Pharmacare. Hi Bill.
BS Hi there, Mary. Thanks for having me. I really appreciate it. Any opportunity to talk about what I’ve been doing and the importance of patients in the equation of healthcare. Just to give you a bit of background, I have a Masters in Health Administration, never having intended to work in a hospital, but felt it fit what I was doing and allowed me to do some research. Then I moved from research, I did twenty five years of running an association for health economists from all around the world and when the founder stepped down — let’s just stay that myself and the new board didn’t see eye-to-eye. So I stepped back and I just said, this is not important, this is not something I need to be doing so I took a couple of months after stepping back and feeling smug, and at the same time I noticed that the pharmacare debate was starting — again — for the umpteenth time. And the le be clear, I actually worked on some of the research on the National Forum on Health, which was the second or third last time that we tried. When I looked at it I realized that there really wasn’t a patient voice. There really wasn’t an understanding of what is the impact of the kind of non-system we have for drug access. So I bought the name, I started collecting stories and posting them. I had to take the summer off because of a health issue, but I’m back at it now, and what I do basically is I sit down with a person or I phone them and I write out their story. Then I send it to them, because it’s their story and I don’t want to misrepresent them. They make any edits they want and send it back to me. They can be anonymous if they want. I actually have one person on my page that’s anonymous, and I asked her why — not to get her to be not anonymous — but I wanted to know the reason. She was embarrassed that they had lost coverage. Her husband had lost his job and so she felt embarrassed about that. I understood that and that’s why it stayed up there. After I’ve done the letters and posted and let everyone know about this, the second step is that I write a letter for that person to go to their MP. I have them look through it, I have them sign it, and then we send it to the MP for them and I copy that to every other MP that’s received a letter from me, which is getting pretty close to all of them. Plus their representatives at the provincial and municipal level if I can. And then I go on to the next story. I have some stories that have just sat for a long time that I’m not able to tell yet because they’re going through such hell. I’ll give you a quick example: Hunter is this little guy that goes to school with my daughter. Two years ago he went in because his knee was sore. Found out he had stage 4 neoblastoma. His father is a serial entrepreneur…
MO So that means, probably because, unlike most of our members, we have some sort of drug coverage and it’s somethings that’s negotiated, but if you work for yourself you are on your own.
BS Yes, and he had a double-whammy because his daughter was very sick as a child, so even if they went the private way, they would be told [the insurance company] would cover everything except the stuff you need. So they do a lot of this exclusion in the private level, so that’s the sort of story, you can imagine. They started a go-fund-me campaign for $250,000. Most of that for drug money. Those are the sorts of things you’re dealing with and you’re trying to help and it can be heart-breaking at times to listen to some of the stories. On the other hand, when you see people suddenly feeling like they have a voice, like they’ve contributed, it’s really nice to see. If you’re sick enough to need on-going drug treatment, you’re busy.
MO It’s exhausting being sick. And it’s exhausting trying to take care of somebody who’s sick. And to try to figure it all out, especially. That’s one of the reasons I wanted to have you one here because you’re such a patient advocate. I think people talk about the need for universal pharmacare. There’s some type of pharmacare out there for people who are low income and seniors, but it’s trying to figure out what that is, is really complicated and convoluted, and trying to get that coverage is crazy. I’ve looked at your website and was reading the stories and thought, okay, which of our members are going through this themselves or seeing people going through it?
BS It’s starting to happen even in the group plans where there will be a change from a $5.00 co-pay to a 20% co-pay, That may not seem like much for a lot of people, but when you’re talking about some of the new biologics, 20% is a big bite! I was on a biologic for three injections. Luckily it almost killed me so I had to stop it, but every month when I had my injection it was $400.00 out of my pocket, not covered at all! What we’re seeing — Mark Andre Gagnon put out a really nice paper that talked about how private insurance is trying to push the cost of all of these high-cost drugs into the public systems. They want nothing to do with it. They just want the cream. In terms of patient advocacy, it really is about getting people to understand what’s really happening out there. I can’t remember who I commented to today, because, once again, I was like: Gee, I’m almost out of a drug, and I’m a severe asthmatic, I have co-morbidities with high anxiety, and things like that, high blood pressure. Every day I’m looking at it and going “Oh my god, how can I be out of that already?” That’s the sort of thing that’s going on all the time.
MO And it’s super stressful to have to try to deal with that. To go “How and I going to be able to afford my drugs?” Nova Scotia has a serious poverty problem. I read and article earlier in the week about the Halifax Municipality, that we have the highest rate of poverty in the country, I think. And the amount of people that are living with food insecurity, so if you have the added cost of drugs, are you going to take your drugs or are you going to eat? How do you take care of yourself and get better when you’re stressed about it? The pharma care that we do have is supposed to take care of these people, but to try to actually go through the process. I remember with my grandmother trying to figure it out, oh my god!
BS What we have, if you really think about it, is a microcosm of the whole US system. If you’re working, poor, or elderly, you’re covered. The Conference Board of Canada, supposedly a non-partisan group, did what they called a study, which was really a survey, and they said there are programs available to 97% of the population. But when you look at that, I don’t know if anyone has ever tried or looked at applying for family pharmacare here in Nova Scotia, but even with not working for the last two years I make too much money to apply. It looks nice on paper, but it doesn’t really exist. The hoops are so difficult. One of the stories that I have on the site is Carrie from Winnipeg. Right now she has gotten to the point where she’s going to run out of her parents’ coverage and she got put on a new drug for her asthma. She has asthma and ADHD. The problem is that the drug is actually a COPD drug, and the plan won’t cover it if your indication is asthma and not COPD. The problem being that asthma is really a subset of COPD and if you have severe asthma you have COPD, because COPD is damage.
MO It baffles the mind. It’s so convoluted.
BS The problem is, the narratives out there, people swallow them, hook, line, and sinker. I had somebody who was at one of these Conferences from the Conference Board of Canada as a patient rep and she came back very much in favour of the “Oh, we’ll just fix the holes in the system” and “We have to have used fees to stop abuse!” and I’m just about going out of my mind reading this email — because I can’t reach this person directly — there’s absolutely no research that says it’s about abuse.
MO In fact, those small fees actually put a barrier in place because sometimes $2.00, $5.00 is a barrier. A very small amount of money will actually stop people from filling that prescription. It’s ridiculous. It doesn’t save anybody but the insurance companies. It’s a way for them to make money.
BS The user fee debate started in the States. The insurance industry in the 70’s was using them to reduce costs and increase their profit. And then a study came out by a guy named Joe Newhouse on the effect of user fees for doctors’ visits. The insurance groups said, “Look, we can not only do this we can blame it on abuse!” because there was some suggestion that people might over-use it. The problem is the wrong people stopped going to the doctor. This is the basis for all the user fees we see. We’re relying on research that looked at visits to doctors and applying it to prescriptions that we have to go to the doctor to see and it’s free and it doesn’t make any sense. I’ve written something called “8, make that 9, reasons that user fees for drugs are stupid”. There is a caveat. If you look at opioids, there’s a reason that people take those even if they don’t need them. That requires something else. Even anti-biolytic, you have to be a little bit careful because you don’t want people taking them just because they have a cold. But, I don’t know of anyone who wants to take an asthma drug for fun. A lot more people would have asthma if there were psychotropic effects.
MO Or if you’re a diabetic. You’re not taking insulin for fun. You’re taking it to keep yourself alive. The number of people who have amputations, the number of people who die every year, it’s been proven! The amount of people I know who are non-unionized, who don’t have a benefit plan, who will try to stretch their drugs out, drugs that are not effective if you’re not taking them every day. They just stop taking their anti-depressant because they can’t afford to fill it for two weeks, so they’re getting the brain zaps. These are drugs you just can’t go cold-turkey off of.
BS If you look at asthma — it’s seen a lot of “Yeah, I’m feeling fine, I can stop taking it.” But asthma treatment is a combination of beta-agonists, which relax the lung muscles, and cortical steroids, that basically reduces swelling of the mucous membrane. If you’re taking your drugs and you feel good and you want to eat and you only have a certain amount of money, as you said, what are you going to choose? You’re feeling fine and then you go through a cycle of collapse, because the problem with stopping cold-turkey with asthma meds is that your body slows down it’s own production of cortical steroid, so if you stop it, all of a sudden it’s like “Oh, hey, does anyone remember how to turn the plant on?” So there is that necessity to treat. With diabetes, I have one of the stories on there, this kid is going to age out soon. His Mom and his Dad work their butts off at low-paying jobs. She works at one, so she has coverage, but it only covers 80%. Here’s a biologic but we’re still paying through the nose because it got into the pharmaceutical system and suddenly it costs a fortune. But that wasn’t what it was meant to do. Banting originally said this should be available.
MO On a previous podcast I talked to someone from the Canadian Health Coalition and we talked about how we truly do need a fully funded, full meal deal, national pharmacare system, and how many people’s lives it will save. It really is essential. These stories need to get out there.
BS One of the things that I’m trying to redirect is to talk about the fact that it will save lives. It’s not just about the money. It’s really about the lives first. Now, when I did an assessment, I kind of tongue-in-cheek said — based on research from the States — said that over 50 years we’ve killed Kitchener by not having a national plan.
MO Medicare just celebrated its 50th year yesterday. It’s crazy to think in the past 50 years that many have died because we don’t have a national pharmacare.
BS Because they didn’t have access to something that would keep them out of the hospital. Which is ultimately what you want to do. This is part of the reason I started Faces of Pharmacare, because it was always the policy makers and the academics and the drug companies, the insurance companies, and nobody in there going “Excuse me, but I’d like to live, if you don’t mind.” Actually getting involved in the patient engagement movement started a while ago for me because I’m a tad outspoken, as you know…
MO Bill and I sit on the Board of Nova Scotia Health Coalition. This is how we’ve gotten to know each other and he’s definitely a very outspoken, fierce health care advocate and patient advocate.
BS Patient advocate, because I believe that there is so much untapped potential in the knowledge of patients. And what I mean is there’s different ways of looking at patients. I’m not talking about the person who broke their nose in a bar fight and is in the ER. I’m talking about the diabetics and the asthmatics and people that, whether they’re in the hospital or not, they are using the health care system every day, because they’re taking their meds. Those sorts of people have so many ideas of how to improve the system. The very first one I went to I was shocked at the number of things people would say: ” You know, it would just work easier if you did this…” Most of these solutions are not high-cost solutions, they’re common sense solutions.
MO And they’re probably things that, a lot of our members who are in health care see every day. I want to be a better advocate for both myself as a patient, but also for my loved ones. I’m sure that’s something that our members want as well. Whether you work in health care or not, you’re interacting with the system, which is pretty broken. We are absolutely in crisis. Do you have any advice on how we can be better patient advocates for ourselves and our families?
BS It comes down to understanding how to use the internet. A lot of people complain about Doctor Google. On the other hand there are some good pieces of research out there. So the first thing I’d say is learn how to differentiate between bad and good research. It’s hard. A lot of people go to PubMed, not realizing that PubMed is actually a much broader selection than Medline. So if you want the good research, you would look at the Medline. So you would just put a Medline filter on PubMed and you won’t get the wonky stuff. The unfortunate thing is that the gold standard for health information, The Cochrane Collaboration, which is now just called Cochrane, is going through a crisis right now. So, what do you, as a patient, rely on? Sometimes it just has to be a little bit of information, sometimes it’s a little bit of gut, but I think it’s important that we get people to really look critically at things and accept sometimes that, well, you k now, you’ve got asthma, you’re going to have to deal with that and this is how you do it. I think there’s also other things that we can do, and that’s starting a discussion of the patient being involved in a lot of different ways. The health research institutes in Canada started a thing called SPORE, which is the Strategy for Patient Oriented Research. I probably was on of the few people to read the whole document and I got really excited. Now, that has morphed into something that involves patients and research and that’s good, in a way. Because it gets maybe a different outcome in the research, so that a patient might say “I’d really like my hands to stop tingling. I don’t care about these things, this is what’s really effecting me.” And I think that’s great. But they’ve kind of stopped short because I’ve seen the, the last three times I’ve been in the health system beyond my asthma, were pure disasters. I can point very easily to simple things that can be done. I feel what we really need is the patient ombudsperson who has the resources to be able to help people understand what’s going on as a patient. To train them so they can sit on boards. I sat on the Capital District health Authority Board before it was shut down. I breathed a high sigh of relief when that happened because it’s a hard job. There’s not many patients that can just pick that up and do that. Learning those skills is not impossible. I think that if you’re going to have a learning health system, and that’s the de rigueur way of calling health form now, I was called up about this on a short term research they’re doing out of McMaster, and I said, if you’re going to really have a learning health system, the patients have to be the start of things. Otherwise you’re just going to fiddle with what you have. In the past, doctors were the patient advocate. That’s not really true for a variety of reasons not withstanding the research shows that they have an interest in getting you out of the office, for example. And they only have so much time. I think we really need to say, do we need real advocacy? The problem is we did have funding for advocacy groups/ Sharon Batt, who’s also on the board of the Coalition wrote a book called Health Advocacy Inc. She detailed how they went from government funding to help women with breast cancer to losing that funding to the drug companies coming and happily filling the void and the whole timbre of the discussion changing.
MO It does change when the drugs companies are the ones paying the money. So it s a hard thing even to just be an advocate for yourself. Sometimes it’s hard to know that you can ask those questions to the doctor when you go to the doctor. Sometimes you feel shut down, like your opinion doesn’t matter. I’m very lucky in that I have a very good family doctor, who unfortunately is retiring in March and I don’t know what I’m going to do after March. But I’m lucky in that he knows my health history, he has been my doctor from the time I was an infant. I have chronic health issues my whole life. To be able to go to him and he knows that history and he listens to me respects that I know. But I’ve gone to other doctors where they just shut me down. It’s hard sometimes to stand up to the doctor and say “No, this is my history, I know my history, this is what’s happening, it’s happened before.” and to have those difficult conversations.
BS For most people, yes. Not all. For me, no, but I learned that from my mother, who once decked a doctor for suggesting that I wasn’t having an attack. The funny part was, I’m not a wheezer and my O2 stats don’t change, but I still have attacks, and this gentleman came in and said “He’s not wheezing, not having an attack.” My mother punched him in the gut so hard he was doubled over. Doctor Gillespie, who was the resident at the time came around the corner and said “Oh, I see you’ve met Mrs. Swan.”
MO But you’re not recommending members punch…don’t’ be like Bill’s mom!
BS But, it was cool. But you have to think about it that way. At the family physician level they certainly have a lot of expertise, but as an asthmatic, I’m the one going to my doctor saying “I want to try this drug” and she’s going “Never heard of it.”
MO So you’re the expert on Bill and how your asthma…
BS Yeah, and there’s a continuum. There’s people that just barely use the system, or even if they use the system they don’t really have the interest. They just want to be treated. And then there’s crazy people like me and you!
MO It makes it really hard when you don’t have a family doctor and you’re trying to get answers and you’re sick or somethings going on and you know you should get it checked out but you don’t have a family doctor, so where do you get those referrals. Do you have to go to the emergency room where you’re going to have to sit for six hours before you get seen and they tell you you’re wasting their time, you have to go to a walk-ion clinic. It’s so frustrating.
BS Remember over the summer there was a letter in the Chronicle Herald from a guy in the valley, I believe. He’s undergoing cancer treatment, doesn’t have a family physician. Every single time something goes on he has to go to the ER, sit and wait in a room of sick people with his immuno-compromised system. Here’s the irony. The valley health system used to have a program where, if you came into the ER and you needed a follow up you were assigned to Doctor Bob. What I find ironic is that’s no longer part of the system and the same person who ran the valley health authority is now running the Nova Scotia Health Authority. But there’s a complete disconnect between what’s really happening with patients and what they hear. I saw that as a member of the CDHA Board. What we were fed at the board level was cleaned so many times it was valueless. Yet I, tow times went to the ER and they were disasters. The board never heard about is and it boggles my mind. This is the background I have and part of it is that we’re still grounded in a 1960s system. We’re still trying to hold on to those administration jobs as health administrators, where we should be thinking carefully about what we’re doing. Backing up even further, part of our problem is our data systems suck! You c
MO I think there was actually an article basically criticising
BS Yes, that report came out from the auditor general yesterday and that’s what he pointed at. Here we are. This is the same people that have no control of what’s going on and they’re in charge of tendering for the one person, one health record, and they’re talking half a billion dollars. In a society where you don’t have to pay for Oracle anymore. Open source software is actually more secure than Oracle.
MO I think a lot of our members who work in health care are on the front lines and they see these issues and they see how the system could work better. I hear them talking about it, going “I don’t understand why this isn’t changing.” Our health care members are dealing with patient-clients. They want to be advocates for their patients and clients. They take these stories home with them. Do you have any advice on how they can be better advocates for those patients?
BS The true heroes to me in the health care system have always been the nurses. I can remember taking my Mom in and the nurse just looking and saying “Oh, she doesn’t have enough O2” and just knew right away what to do. Any of my times in the hospital it’s always been the nurses that I relied on for more useful information. To be an advocate for someone when you’re in the system, part of it is that you’re in the system that is still doctor-centric. You can see that if you go over to the VG Site. If you remember when the CDHA was going there were signs everywhere that said Patients First. Well the new signs that are up, ironically, I have a picture of one over one of the unusable water fountains, talk about the care givers, nothing about patients. I understand where they’re coming from, but they’re also getting directives that they need to refer to patients as clients. That’s just another way of separating yourself from the sick, from the people that need help. What they can do? If they just keep in mind, look for that information coming from patients. There are a few of us out there that do right. We do try to say “Hold it a second, this is how it really effects us.” There may be a way. Some of them may be sitting on one of the boards. The problem that I see now with the NSHA, I don’t think there’s any way to get to them. I understand the situation. They’re trying to meld 7 groups into one. I don’t know why we need a Authority sometimes when we have a health department and we have less than a million people, but that’s another discussion. When you decide to fix the dyke, you don’t bring everybody in for a meeting and pull all the fingers out of the dyke to have a team meeting. You still have to have the fingers in the dyke. I’ll give you a really good example. I mentioned earlier that I had to take some time off from Faces of Pharmacare. I had done through de-proscribing, feeling great – June, running. End of June I finished a half-marathon. Three days later I had a CT that had been scheduled for a while. I coughed up a bit of blood in March, pretty normal stuff, but just in case we scheduled the CT. So I had the CT, went on with my day. An hour and a half later the doctor calls and says come in tomorrow. I go there the next day and she says this is not good news, Bill, and I’m shocked. You have a spiculated lesion in your lung. If you know the term spiculated makes doctors’ sphincters go “Wheep!” really fast. It’s a scary word. And typically 90% of spiculated lesions are malignant. I was devastated. It wrecked my summer. I didn’t get a follow-up with the surgeon until the end of the summer. But what was galling was that the surgeon looked at the same CT within 2 or 3 days, disagreed with the radiologist, but that’s where the information stopped. I would have had a much different summer. This is when I talk about the solutions that are out there, you could have sent a frickin’ email to the doctor! I would have had a good summer. It’s a breakdown in communication. Taking all the fingers out of the dyke and trying to start the new system and forgetting that, okay, I understand that most of the time you’re seeing people that are really sick, but I went through a depression. I went through severe anxiety. I had to go back on medication that I had successfully weaned myself off of so that I could function. It would take me hours some days to create a bill. Now, I’m doing better. Hey, great, I don’t have lung cancer. But, I want to create a system where that doesn’t happen to anybody any more. And that’s why you start with the patient.
MO Yeah, and that’s why it’s important to have that communication back and forth. I don’t think it’s anything that we’re going to fix any time in the immediate future. The work that you’re doing, that the Nova Scotia health Coalition is doing, and that our members are doing day-to-day in the workplace. I know they really care and they’re going to try to take care of their patients. That’s the number one focus of pretty much anyone I talk to is their patients and being good advocates and trying to fix the system that’s broken from within. It’s really demoralizing and hard sometimes, so it’s good to know you have the support.
BS And I think it’s growing. There is a lot of patient engagement going on. There’s a growing vocal group that’s saying, wait a minute, you’re not really representing me, you want to sell more drugs, or you want to sell more of these or more of that. I’m starting to see the ability to pull together. I belong to a couple of co-ops. One is Canada and one in the US. They’re run by patients. I don’t quite agree with the way they’re doing some things, and it’s not how I would do it, but it’s not my thing. But, I’m still going to join it.
MO Getting out there and getting involved in these groups and having your voice heard is really important. That’s one of the reasons that I showed up to the Nova Scotia Health Coalition AGM. That’s coming up again in January. I ran for the board because I feel like health care is such an important issues. I really feel like it’s important that people get out there and fight for health care. It’s something that we’re so proud of. It’s something that could be magnificent and it’s something to BE proud of, but we need to fix it and wee need to step up and do that.
BS The first step of that really is pharmacare, because the money that we need to fix the rest of the system comes from the savings that we’ll get from pharmacare. One of the things I should point out at Faces of Pharmacare of value to the members: you don’t have to be a patient to tell a story. Tim, who’s on the board, is a doctor. I have his story up there because of what he sees. Contact me if you want to tell your story, or you know that there’s someone whose story should be told talk to me. I’m always open to that. I love talking to people about getting the right narrative and really understanding. Remember, we treat doctors and hospitals as a right. But we treat drugs like a privilege. If take that to the very end, if it’s a privilege, you have to say, okay, I’m comfortable with people dying. I don’t think Canadians really are. I think they’re just so used to the system that they don’t understand how broken it is.
MO So, it’s https://www.facesofpharmacare.ca/If someone who’s listening has a story they’d like to share they can email you through that?
BS That’s right, I’ll reach out and we’ll have a chat.
MO On Twitter?
MO Perfect. I highly encourage people to contact Bill and get those stories out there. If you want to be anonymous that’s fine too. I highly encourage you to get involved with health care activism. Bill, you are quite an inspiration to me, the way you fight for not just yourself, but you really are a fierce patient advocate. I really admire the drive that you have to make things better, not just for yourself, but for people right across the country. I really enjoyed reading those stories and I hope that our members take a look at it and get involved.
BS Thank you for the kind words. For those in the audience, I’m blushing!
MO Thank you so much. I enjoyed talking to you.
BS Any time. I’ve got some other projects in the pipeline, so maybe I’ll be back.
Mo It’s always good to talk to you. I do hope our members get out and get involved with health cate activism. I already know that most of them, the ones who work in health care are fierce advocates for their patients and clients. It’s good to know that people recognize that you’re doing that and that our members know they’re not alone in trying to do this advocacy. Sometimes you feel like you’re fighting for your patients and your clients and you feel like you’re in it alone, so it’s good to know that there are people out there who you can contact. Even just to say “have you tried to do this or have you tried to do that” to bounce ideas off of.
BS Yeah, I’ve been known to help out people just in that guise. Just to say, here’s some ways you can work with your doctor.
MO That’s awesome. Thank you so much. I hope everybody enjoyed listening to this conversation as much as I’ve enjoyed having it.
BS Thank you very much
MO Be sure to tune in next week. This is a weekly podcast. If you have any ideas of who we should talk to next make sure you get in touch with the communications staff or comment on the Facebook site. For those who are hearing impaired, just to let you know, there will be transcripts up on the NSGEU website as well. Thanks again for listening. We’ll talk to you again soon.