I'm Aware That I'm Rare: Sanjay Mehta, MD

Sanjay Mehta, MD, FRCPC, FCCP, is PHA Canada’s Chair. He is additionally Professor of Medicine at the University of Western Ontario, and Director of the Southwest Ontario Pulmonary Hypertension Clinic at the London Health Sciences Center in London, Canada. He is also Chair of the Pulmonary Vascular Disease Committee of the Canadian Thoracic Society. Dr. Mehta has been caring for patients with PH and doing research in PH since 1989.  In this episode, Dr. Mehta discusses PHA Canada’s 10 Year Anniversary.

Transcript:

I’m Sanjay Mehta. I’m a respirologist, also known as a pulmonologist in the U.S., and I’m involved in pulmonary hypertension from many different aspects.

I’ve had the great fortune of training in pulmonary hypertension in Montreal at McGill University with one of the fathers of PH here in Canada, Dr. David Langleben, and now for 22 years, since 1996, I’ve ran my own practice in London, Ontario. It’s kind of the center of Canada, at the University of Western Ontario, and I’ve looked after PH patients since that time. Also 10 years ago, got involved in PH in a more national way as small groups from across the country came together and talked about founding our own PHA Canada, and so I was one of the founding board members 10 years ago, and for the last four years, had the great pleasure of being now the chair of the board.

Ten years ago, 2008, was a very exciting time. Clearly, we already made great progress in pulmonary hypertension care. We had a network of some 10 or 12 clinics across Canada that worked together closely. The physicians knew each other. We were a small group, somewhere perhaps about 20 of us. As well, patients and their families, once they got diagnosed, recognized that this, being a rare illness … they had never heard about. Their friends and families had never heard about it, and so clearly there was a sense of isolation.

So they had started, of their accord, to form little support groups across Canada, and some of the most powerful ones were in Vancouver. There was a couple in Ontario, and they also went forward and did a national one. There was wonderful organization in New Brunswick founded by the mother of a patient. So all these little groups were already going up and doing a great job supporting patients, families, advocating in their own way, educating patients and families. We realized that to do things in a bigger way, educate them, support them, advocate for them, we really needed to create a national organization. It kind of started from the ground up. It was three patients, three family members of patients, and myself. So there were seven of us that were involved 10 years ago.

Ten years is a long time in a disease course, and clearly this last 10 years has been amazing in what’s changed in pulmonary hypertension, both from the clinical/medical side, looking after patients in the clinic, and even more so from the national patient support side with PHA Canada. From the first side, the medical side, the last 10 yeas has been amazing. The first medication ever available in Canada was only 20 years ago in 1996. The first intravenous formulation, epoprostenol. Over the last 10 years, lots more research from multiple pharmaceutical companies and our partners, and now it’s unbelievable that we have 10 different medications approved by our FDA equivalent in Canada, known as Health Canada, and largely available for patients to be treated with.

It has been a challenging time. Ten years ago it was very unusual for a patient to be on more than one medication, because largely of cost and also limited data, and that has become much stronger and so now it’s fairly standard across the country for people to have access to at least two medications. So many Canadians, at least half to two-thirds of Canadian PAH patients, would be on two medications. There’s even now starting to be a small number of patients on three different PH medications, which fits along with what we know, what the three different key pathways in which medications have been developed.

This is still challenging, but the data is coming that’s even stronger from around the world, and we’re able to go to our government payers and get approval on a case-by-case basis. So that’s dramatically changed over 10 years. The nice thing also I see in clinic, when I see a patient now, I have to say to them, your disease is bad or we don’t get to treat you or if something goes wrong. The average person still only lives two to three years, but that is almost unheard of now, because in response to treatment, people clearly are living longer. The statistics on average, seven to 10 years, and we’ve had people that have live now 20 years, ever since I’ve been seeing them here in clinic. And so it’s just a much more pleasant time to be in clinic, to teach people about PH, have them understand their illness. They’re still overwhelmed at the beginning, but once they understand it, they get over the idea of a fatal illness, and they realize there’s lots we can do to help them, then it’s actually much more fun to help them look after themselves. And like I said, they’re here for many years and they start to feel better and start to see that and really enjoy life much more than we could ever offer 20 years ago, for sure, and even a little bit 10 years ago was limited. That’s kind of the medical side.

The community side is really important. So 10 years ago, like I said, we were a small group of scattered organizations across the country, and that’s grown tremendously, so PHA Canada now has reached all the clinics. There’s now, I think, 19 adult pulmonary hypertension clinics. There’s also some pediatric clinics. There’s a couple of different surgical clinics, so somewhere around 22, 23 clinics across the country looking after PH patients. And so we have reached all of those, and reached the patients, their families, and provide educational material. We don’t really have a membership structure, so to speak. We’ve gotten away from that idea because lots of people don’t want to be members. They want to connect in different ways, be it conferences or be it, especially these days, online through social media or our website or Facebook page, and connect with us, and make use of our resources, which is obviously why they exist. We’re happy with that. In some ways, I don’t want to say it’s a pleasant time to have PH. It never is. It’s a still a terrible disease. But this is a time that we can do so much for people from the personal side, for them and their families, and also from the medical/clinical side. So that’s what’s really changed dramatically, especially over the last 10 years since PHA Canada has been added.

One of the challenges that we’ve faced over the 20 years that I’ve looked after PH, and even the 10 years of PHA Canada, is obviously limited awareness of this disease, pulmonary hypertension, partly because it is still uncommon, and the challenge is physicians and healthcare providers deal with so many illnesses. Many of the common ones, in terms of things like asthma and COPD in my field of respirology, which still are not always properly diagnosed and managed, and so there’s a lot of educational efforts on those common illnesses, and it becomes more difficult then to sort of have to recognize an uncommon illness or rare disease like pulmonary hypertension. Regardless, we spent a lot of time educating physicians, and clearly for an illness like pulmonary hypertension, the focus has largely been specialists. Cardiologists, respirologists, rheumatologists who see this in the setting of scleroderma and connective tissue disease, as well as a little bit hematologists who see this in the setting of people that have pulmonary emboli or multiple blood clots in the lung. I think we’ve done a good job, and a lot of those specialists across the country now know about this disease and they’re much quicker to refer in to one of the PH centers. I see that in my own practice and my own clinics. We see people referred often within a week or a month of being diagnosed with PH on an echo or suspicion of PH even clinically, which is fantastic.

The challenge with many parts of the world, like Canada, it’s a big country. A lot of patients don’t live near a large center where the clinics exist. Even if there’s 20 some clinics, they’re still in the larger cities, and a lot of patients don’t live near there. A lot of patients end up seeing a family doctor, often for multiple visits before they get to a specialist, and unfortunately this day and age is ridiculous to think that some people still don’t have a family doctor, and have more trouble getting to care. That’s, I think, the challenge for an illness like PH, is making inroads into the smaller communities, into the family doctor’s office. Even they have a sense, oh yeah. There’s an illness, a bad illness, that can make people short of breath, tired, and give them leg swelling. It’s not simple heart failure or asthma. It’s an important illness, and that could be playing a role here. That’s going to be a challenge for anybody in the world who does awareness work in PH, and it’s been a challenge for us in Canada. I think we’ve done some good work. Some of our educational stuff has been aimed at family docs. I think overall we’re going to keep doing that going into the future, trying to target remote communities, family docs. We’re always going to struggle. Medicine has become, if anything, more challenging, with more illnesses, more genetic disease known, and clearly a physician can’t be expected to know every illness that’s ever been described, and all we can hope to do is make sure that they have some sense, this could be something else serious. We should get this person to a specialist. And then specialists are where our educational focuses really have been over the last 10 years, and will always continue to be, because they’re the ones that really do the testing and get these people into the expert clinics.

We’re celebrating 10 years this year, which is very exciting. Clearly it’s a time to look back, celebrate, take stock of where we are which is very exciting. However, much more important than an anniversary is to say, okay. What’s coming? What do we want to work on the next five, 10 years? And so I am really optimistic about where pulmonary hypertension has come to and where it’s going over the next five to 10 years.  As I said earlier, people are living longer, thanks to the therapies we have, and thanks to the care that they get at expert PH centers. We’re actually getting close to a time when somebody could have the disease, pulmonary hypertension, but in response to good therapies and good support, which is really important for their emotional state and their ability to function day-to-day, in response to both of those, they could live, we think, almost a normal life.  And what that means is that PH might not shorten their life. They might have 30, 40, 50 years, like anybody else their age, and most importantly, every single day they shouldn’t have to think about the fact that, oh, yeah. I have pulmonary hypertension. I have to be careful. I have limits. I have restrictions. That’s really where I see ourselves ending up in the next five to 10 years, thanks to therapy and thanks to care, that people can have this illness and they can live with it just as long as if they didn’t have it. Now the challenge with that is, I don’t think we’re going to see in the next five to 10 years a cure for pulmonary hypertension. That’s a laudable goal of many research activities around the world, but that’s going to be a real challenge, and simply because people don’t come to us when they have very mild early pulmonary hypertension. They typically show up to us when they have symptoms, and we worry at that point the disease had already progressed significantly, and it’s hard to reverse all of that.

And so we’re going to diagnose people still. Get them onto treatments and they’re going to live better. One of the challenges about living better with PH is the medications. We have wonderful medications that help people. They’re not all very easy to take, but patients understand this. Some of them are quite cumbersome and complex in terms of infusions, either intravenous or under the skin or subcutaneous. And then even the new oral medications, obviously easier than an infusion pump, but lots of side effects to some of the oral medications. So they’re not perfect, but we are looking for new medical options that might have less side effects and yet still offer clinical benefit.

But I think it’s going to be an exciting time clinically in the next five to 10 years in terms of people being a lot better. And partly in response to what I said before, that many people are going to be on at least two, and probably three different medications to treat their pulmonary hypertension.

Community-wise, we’re only growing. And I think we all recognize that there are significant gaps in the support we offer. More than half of patients with PH suffer symptoms of depression, anxiety, and those have not largely been addressed. That’s something that we do want to focus on in the clinics and at PHA Canada. Similarly, patients have social issues in terms of being able to go out, in terms of being able to afford insurance or get insurance. So we see a lot of role for PHA Canada to grow in those areas of support for patients and their caregivers over the next 10 years.

I’m Sanjay Mehta, and I’m aware that I’m rare.

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