I’m Aware That I’m Rare: Sanjay Mehta, MD (418)

the phaware® interview

PHA Canada Board Director, Sanjay Mehta, MD, on 15 years of inspiring achievements in advocacy, research, and community support for the 2023 National PH Community Conference taking place June 9–10 in Ottawa, ON and what lies ahead for the future.

PHA Canada invites you to celebrate 15 years of inspiration at this year’s National Community Conference June 9–10! Can’t join in person? Register as a virtual participant!

I’m Dr. Sanjay Mehta. I’m a lung doctor, also known as a respirologist in Canada or a pulmonologist in the US. For many years I’ve been interested in and looked after patients with pulmonary hypertension. This started when I was quite young as a medical student and resident back in McGill in the 1980s and ’90s, and first saw a patient with pulmonary hypertension that was obviously quite sick, as they often can be. I was fascinated by the disease, by the illness. Then, when I finally landed in London, Ontario, where I live and work, I was able to set up my own pulmonary hypertension clinic. We’ve been looking after patients ever since. It has been a joy, because over the last 25 years, as many of you know, wonderful new treatments have become developed, available, funded, and largely available to help many patients with pulmonary hypertension live better lives and also live longer.

Besides looking after patients, I also do a lot of teaching and education around pulmonary hypertension of my colleagues and physicians. Then, I also got involved in the community, because I realized one of the biggest things was awareness lacking. Patients didn’t know what this was. They were being delayed for a year or two before they were being diagnosed. There was all these initiatives happening across the country where people were similarly feeling that they needed to connect the community better. So from the BC Pulmonary Hypertension Society, from the New Brunswick one, from an Ontario one, we decided that we needed to do something national. I was quite fortunate to be involved as a physician in the founding of PHA Canada in 2008, along with six very special people; three patients suffering with pulmonary hypertension, and three caregivers looking after their loved ones with pulmonary hypertension.

It was quite a unique time. Our first national PH organization, very much in the tradition of what had already been developed in the US, the PHA, of course, very well known, and now going on 30 years. This is a special year because we are indeed celebrating our 15th anniversary of PHA Canada. Starting from a very small number of staff and a small organization, we have had an incredible growth, fantastic input from patients, caregivers, physicians, nurses, pretty much everybody involved in the Canadian PH community.

We’ve grown to an organization that now is across the country, connecting more than 20 clinics in a network that works together, not only to develop clinical approaches to PH care, but also to do research. There’s some really exciting new stuff coming in PH research in Canada. We’re quite excited to get together in person for the first time in five years at a National PH Conference coming up June 9th and 10th in Ottawa. We’ll get to see each other, enjoy each other, again, of course, learn about pulmonary hypertension, be able to support patients and caregivers and give them the sense of the excitement that all of us have about where pulmonary hypertension is going hopefully in the next 15 years.

The founding of PHA Canada in 2008 wasn’t an easy thing, as you can imagine, because these strong local support groups, BC, New Brunswick, Ontario, even in Alberta, they were doing a great job. They were smaller, they were community focused. So patients when they joined these organizations had somebody that lived in their community that they could get to know, connect with, and share their pulmonary hypertension experience with. Yet, there was a lot of obviously duplication across the country. If we wanted to go forward and think about supporting and educating patients and families across the country, and even more so creating an organization that could then advocate nationally for PH patients’ access to the best care, the newest medications, you couldn’t do this on a regional or local basis. This had to be a national organization. When people found something, like a small organization, it’s very hard to give that up. You have to show them that this can be better if it’s bigger, and also serves everybody’s needs.

As well, you can imagine in a small organization, there’s usually only a couple of people doing all the work. That was challenging for them to keep this up because it was always difficult to get people to step in and help you do the work. This was now a national ability to be able to grow this, as we’ve done over 15 years. Even though it was a challenging time, it took about 18 months of discussions between the several territorial provincial groups before we were able to move forward with some strong opinions and strong voices from many of the groups. But those are the same people that became our initial PHA Canada Board Directors, and who helped us drive forward. In fact, all of those people, the six patients and caregivers and myself, were very kindly appreciated in 2018 at our 10th anniversary with this new program called the Eternal PHriends of PHA Canada.

As you all know around here, we spell friends the wrong way, with PH instead of F. So that was the first time we had this program. 11 people were nominated and accepted as Eternal PHriends of PHA Canada, and this is something we’re going back to in the 15th anniversary at the upcoming conference, with two other nominations of two very special women who’ve also been instrumental to the growth and development of PHA Canada.

The Eternal PHriends Program was initially created to recognize that an organization like ours, obviously built by volunteers and dependent upon their energy, their commitment, their passion to grow, to be able to support more patients and advocate for them, as I mentioned. So this was why the program was created and recognized the founding members, as well as a very few other key members. That program still exists and we want to move it forward.

We are quite fortunate this year. Two wonderful, strong women who have been instrumental in growing us in developing PHA Canada, and especially in very different aspects. First, is a dear friend of mine, Roberta Massender. Roberta was the aunt of a patient with pulmonary hypertension diagnosed a long time ago in 1996, her niece, Nicole. Nicole had other issues and sadly didn’t live as long as we would love for a young woman of 20s to live. She died in 2006. But very quickly, Roberta got involved, helped Nicole manage her illness, saw what she had to deal with. Nicole had an opportunity to take a job in Switzerland that she had to give up because of her illness. At the same time, she was able to locally grow, work, even fall in love, which was wonderful. But Roberta got a great sense of what patients needed. So she joined very early on the BC Pulmonary Hypertension Society, and she served on the board for 10 years.

Now, during that time, when PHA Canada was founded, Roberta also had this very strong national vision, so she came and joined us on the board. Roberta came in from a background of financial and fiscal services, manager at a CIBC Trust company. She really helped us become much more formal in the administrative and fiscal properties of PHA Canada. That was important as a new organization to have those processes in place. She was incredible. Her commitment to patients, also her commitment to administration, making sure that things were done well.

I remember a time that I was chair and she was my vice chair for six years, we were going through a difficult time. We’d lost a couple of staff people and a lot of uncertainty about the fiscal operation and the organization. She stepped up. She would be in the office many days working with the staff, as a volunteer, to help us get through that tough time and then get back onto solid footing. So in my mind, there’s no question, from the emotion, the commitment, the passion, and the hard work that Roberta put in, she absolutely qualifies as an Eternal PHriend of PHA Canada. So it was an honor for me to nominate her and to have her receive this award.

The other nominee is also a very special young lady, and that’s Loretta Chu. Loretta, sadly, was a patient. Loretta had been affected by many different illnesses that led to pulmonary hypertension. This is sadly something that she suffered through childhood in some ways, and friends of hers recognized this. Yet, Loretta never wanted to talk about her illness, her journey. Her big thing was when she got diagnosed and got treated, was helping and supporting others. This is not easy for somebody to do, first and foremost, because you’re always reminded of how serious this illness is, how scary it is, when you’re doing well.

If you met Roberta, you would be shocked. She always seemed very fragile and frail. She seemed to have almost translucent skin, and yet she had an energy to her, internal and external. She was always committed to anybody that needed her support directly. In fact, she founded the Toronto PH Support Group, one of the best, strongest groups in the country that has continued the longest. It was very clear that any new patient was able to reach out to Loretta, not only in Toronto. I had patients of mine in London, Ontario reach out to her, as patients from Nova Scotia did. She would take whatever time it took to help them understand the illness, what was going to happen, what the options were, what they were going through.

There are an innumerable number of voices that say she was so instrumental to their early journey in dealing with their own pulmonary hypertension. In fact, some of the special ladies on our board, Joan Paulin, the mother of a patient, reached out to Loretta as soon as she could and was able to be comforted to some degree. Our retiring chair, Nicole Dempsey, very similarly connected with Loretta. So Loretta has had an incredible effect on many, many patients with PH, largely from the personal connections, supporting them, educating them.

Her other aspect of PH involvement is also unparalleled. She made it her mission early on, even though she was suffering, to advocate for patients with pulmonary hypertension. So she went to our Ministry of Health in Ontario, in Toronto. She also went to Ottawa, the Ministry of Health, to advocate in saying all new medications had to be made available, had to be funded for patients to be able to benefit from these. So, again, not any question that Loretta Chu has made an invaluable impact on the Canadian PH community, growing PHA Canada to the support organization it is, and all the fantastic advocacy work we’ve done. So both awards very, very well deserved.

At our upcoming national conference in Ottawa, again, our first live meeting in five years and the first National Conference in many, many years, we are so excited to get together, partly to celebrate our 15th anniversary. But of course, nobody wants to live in the past. We want to go forward. And yet it’s important to recognize our history. When we were founded in 2008, we only had a couple of different medications to help patients with pulmonary hypertension. It was very uncommon that people were living more than five, 10 years, sadly. Since then, we now are up to 10 different medications. So the research has been phenomenal. The involvement of patients in these clinical trials to be able to develop the medications has been fantastic.

As well, of course, from several small regional provincial organizations, we’ve gone to one national voice for pulmonary hypertension in Canada. So patients across the country, their caregivers, physicians in more than 20 clinics, nurses, are all connected in this greater community, which is fantastic for support, for education advocacy.

One of the things that we’ve learned over the last 15 years, not surprisingly, is listen to what patients and their families want. Early on, it was pretty clear they wanted to be educated, they wanted to be supported, they wanted to know somebody was in their corner. So we went to government and advocated for access to medications. Now that we have a lot of medications and a lot of fantastic educational materials, the tone in the community has changed a little bit. People have always been interested in research. If you ask a PH patient or family member, what’s their number one ask, they want a cure for pulmonary hypertension. Clearly, some people have made this their mission. It’s not been an easy thing. I’ve often said that I would love to see a cure, but given the nature of the disease, I think that’s going to be a challenge in my lifetime.

Yet, much more important to me is always moving forward with advances that not only offer people a chance to live better day to day and live longer, but I like to think one day many patients living with an illness that they don’t have to think about from day to day as they’ve always had to, that they can feel, “Today I’m going to go do this and this. Oh yeah, I have an illness that I don’t even have to think about or worry about today.” That would be a fantastic win!

So patients have told us they want us to commit more to research at PHA Canada. As we look at our background, 15 years, and where we’ve been, and we look forward, we don’t want to give up what we’ve done. The support, the education is always going to be preeminent, because new patients are going to come every week, every day. They need to know that we’re there for them. There’s a whole community they can connect with.

Advocacy. There are new medications already coming that are going to be more expensive, more difficult for our governments to find the budgets for. So advocacy’s not going away, that’s going to remain a major focus of PHA Canada. Yet, the most recent patient surveys have said, “You know what? We want to see a greater commitment to research. We want to see new treatments, new diagnostic approaches.” So we have listened.

Just over the last two years, PHA Canada has made a major commitment to investing in PH research. Partly what this means is getting involved with all of the researchers in Canada looking at pulmonary hypertension and saying to them, “Okay, patients want us to commit to research. You tell us as the PH researchers, what can we help you with? What do you need from us?” They’ve come back with some fantastic ideas. I’ll give you just two examples.

One is a national biobank. What that means is we collect information on patients that are already known. That could be blood samples, could be genetic material. Sometimes if patients go to lung transplant, they don’t have pulmonary hypertension anymore, we can get samples of their lung tissue. All that can be stored for people in Canada to use for research and in their collaborations for people around the world to use to move PH research forward. So biobank is a very exciting project, just getting off the ground.

The second thing is we know that if we’re doing research in a disease area like pulmonary hypertension, I, as a physician, have a sense of what should be measured. The companies have their own priorities trying to get their drugs approved and funded. But wait a second, the patient at the end of the day is the one taking the medication. What do they want out of a medication? So we need to ask them more, and this is happening, fortunately in the right way. It’s what’s called patient oriented research. So all clinical studies now have to have patient involvement, directly or indirectly through PHA Canada, and say, “If we do this study with this medication, besides measuring things that are important to physicians, like their echocardiogram or their six-minute walk, let’s have patients tell us what they want to see get better. Is it their symptoms? Is it their quality of life? Is it their survival? Or all of those?” This is a big impetus to get patient involvement in research, and definitely a big focus at PHA Canada going forwards.

As I’ve said, we’re all very excited to get together, live, in person, see each other, greet each other, hug each other, coming up June 9th and 10th in Ottawa. Of course, you can’t always join us in person. The country’s big, people don’t feel at their best. There is absolutely virtual options for you to chime in to watch the sessions and definitely send in your comments and questions.

The reason we do this is very simple at the end of the day. It’s patients who still are suffering with this illness, live with this every day, and their very close caregivers, family, friends, others that are involved in this struggle with them and are very important to them. We’re always going to be there to support them, to educate them, and doing that in person is of course the best thing.

Yet, I want you also to feel the excitement of what we feel as a Canadian PH medical community. We have made wonderful advances over 15 years, based on research, based on working together. We have such high hopes for the progress that we’re going to make in the next five years, 10 years, 15 years further, to make this disease something that you don’t have to worry about every day, that you can go ahead and live your life to its fullest, to its normal, natural length, and not have to worry about, even though you have the illness and you’re on treatment. So that’s what we’re talking about, supporting, educating, living life as fully as you can for those of you who are affected by pulmonary hypertension. So come join us.

I’m Dr. Sanjay Mehta. I have the great honor of being a pulmonary hypertension doctor, and that’s because I’m aware that my patients are rare.

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