Foreign Affairs Committee on March 24th, 2014

[The Chair, Conservative, Dean Allison]

Due to Standing Order 108(2), we'll get started on our briefing on World Tuberculosis Day.

I want to welcome our two witnesses who are here today. We have Helen Upperton, who was a silver medallist in bobsled in Vancouver.

Welcome. We're glad to have you here. I know you had a fairly unique experience cycling across India. We hope to hear a bit more about that shortly.

From Doctors Without Borders, we have Peter Saranchuk who is the adviser for tuberculosis-HIV.

Welcome, sir. We're glad to have you. I don't know how many people had a chance to go to the reception they had over lunchtime, but it's good to see you again. I'm glad we could get you on here for an hour.

Ms. Upperton, why don't we start with your 10-minute statement? Then we'll go with Mr. Saranchuk. Then we'll go around the room and ask a few questions for the next hour. I'm going to turn the floor over to you. The floor is yours.

[Helen Upperton, As an Individual]

Thanks so much for having us here today. It's a really big honour. This is my second time at Parliament but my first experience in this type of environment, so I wrote notes that I'm going to be reading, because this is a little intimidating, even for an Olympian. I'll do my best.

This is an opportunity for me to share a great story and a personal experience that I had with MSF in learning about TB. It began in January. I was invited by a gentleman I met coincidentally, Dr. Unni Karunakara, who was the international president of MSF. Dr. Unni and the MSF team in Toronto invited me to join him on a really incredible adventure. When Unni's term as the international president finished not very long ago, just a few months ago, he decided that he wanted to return home to his country of India after 20 years of being away. He wanted to reconnect with the country to discuss global and local health issues and to raise awareness and campaign on behalf of MSF. He decided to do this by cycling from the north of India to the south of India. He rode 5,673 kilometres in 112 days. I joined him on day 93.

People assume that for an Olympic athlete like me this type of cycling trip would not be too far out of my comfort zone, but it was definitely out of my comfort zone. It wasn't a walk in the park, even for somebody who hurls herself down a concrete track at 130 kilometres an hour. I'm a sprinter, so I don't do a lot of endurance activity for prolonged periods of time, not to mention that I'd never been to India before and had met Dr. Unni only once, two years prior to this big adventure. I anticipated a lot of firsts in my life, and that indeed happened. I said yes to Unni and the MSF team in Toronto right away. It was an incredible opportunity and there was no way that I could say no.

The next question a lot of people ask is “why?” Why become involved in this, why be interested, and why take this chance? I guess the answer is twofold. I spent my life sharing my passion of sport with pretty much anybody who would listen, from government officials, to students in classrooms, to corporations and businesses, and I find people's passions really contagious. For the people I met at MSF, and especially Dr. Unni, I found their passion about MSF really interesting. I became fascinated by this concept of a global community helping to improve the health and well-being of people all over the world.

It's not just that. I also spent over a decade living a fairly selfish lifestyle. Being an athlete is a really selfish thing. You have to be intensely focused on one goal and one objective. Mine was to represent my country at the Olympic Games and to eventually stand on the Olympic podium. Every decision you make has to be about your own needs, and every step you take gets you either closer to or farther away from achieving that goal. It's a pretty selfish lifestyle.

I've competed in sports since I was 12. I represented Canada in four different sports, so it's been pretty much a life decision. It's not purely selfish, as amateur athletes in Canada don't make a lot of money and most of us do the sports we do because of the joy of representing our country and participating in something we love. It's not a journey that we do alone; we have teams of people supporting us. The government supports athletes here in Canada, as do technical experts, sports science experts, coaches, family, and friends. We're really lucky in this country to have so much support behind us, and a lot of athletes search for ways to give back, to do something that's not selfish, and to help people less fortunate than themselves.

Many athletes I know, including me, are just as passionate about charity work, volunteering, and non-profit organizations as they are about their sports. Often, you're given a voice and a platform, and you can talk about things that are important not just to you but to many people. That's how I found myself involved with MSF. They gave me an opportunity not just to raise funds and awareness on behalf of the organization; they gave me a chance to see the medical issues that were facing a country I'd never been to before and to get a true understanding of what it's like to fight a disease like TB by seeing it with my own eyes.

Unni and I biked for three days. On days two and three, we covered over 210 kilometres of Indian countryside between Bangalore and Vellore in the south of India. It was a really incredible experience. You get to experience the culture, the food, the hardships, and the beauty of the country, and you also meet a lot of incredible people. I also had many hours to talk to Unni about his amazing life and his experience in dealing with so many global medical issues through his work as the international president of MSF.

He told me that 25 years ago when he was at school in Bangalore, it was known as the garden city. It was full of trees and flowers and was very beautiful. When I was in Bangalore, it just seemed very polluted and crowded. It seems that in the big cities in India, the population rapidly outgrows the infrastructure.

There are roughly 1.2 billion people in India. We were biking along this very bumpy country road and Unni said to me that every day the number of babies born in India is equivalent to the population of Australia. I never forgot that statistic. It's a pretty alarming number.

Trying to bike through Bangalore was actually one of the most frightening cycling experiences I've ever had in my life. The traffic regulations and the traffic lights are just a suggestion in India and not really a rule. It was one of the many moments I appreciated my home country a little bit more.

Each day we rode into a different state was like being in a new country, because the landscape changes so much and the culture and the food are so different. We covered three states in total. We had a wide range of paved and unpaved roads. When you're on a bicycle for 10 hours a day you are hoping that you get more paved roads than unpaved roads.

After the ride was over I flew to Mumbai and I spent two days learning more about MSF and specifically the projects that they're working on in India. The MSF clinic in Mumbai deals with second- and third-line HIV treatment, hepatitis C, and multi-drug-resistant tuberculosis or MDR-TB. Both tuberculosis and MDR-TB are huge issues facing the country of India. They're not alone in this struggle. They also deal with a lot of co-infection at that clinic. I spent countless hours listening to patients, doctors, nurses, and researchers tell me their stories and about all of the different projects and programs that they're running there.

MSF provided me with one of the most memorable experiences of my life, and that's a big statement coming from somebody who's been to two Olympic Games. With a Canadian photojournalist and one of the MSF nurses, we visited an 18-year-old girl with extremely drug-resistant tuberculosis in the slums of Mumbai. Just going to the slums of Mumbai alone is a pretty life-changing experience, but when I met this incredible girl and her family at their home, I became truly passionate about raising awareness and funds for this global TB issue.

She is a student, a very good student, actually. She began studying medicine. She and her younger brother are both smart and passionate about school, and decided with their parents that they would take the train to a school farther away to receive better instruction from better teachers.

The trains in Mumbai are a little bit tough to imagine. They're so overcrowded, there are often people hanging from the windows and the doors on the outside of the trains. She believes this is where she caught tuberculosis, in such close proximity with other people. They caught the train twice a day, every day, to go to school.

Her symptoms got worse and worse so her father finally took her to the hospital, where the medical staff performed the most widely used diagnostic test for tuberculosis, which is a sputum test, developed over a century ago. Her test came back positive, so she was put on a regime of very strong TB medication for two years. That's 14,600 pills—over 20 pills a day for two years—and 240 injections, with a list of side effects that make most patients feel worse when they're on the medication than before they started taking it. Permanent deafness is one of the potential side effects of the medication.

During the course of her treatment, she became more and more ill. Her weight dropped to below 70 pounds, she was forced to drop out of school, and she couldn't leave her home. Her family was really afraid that someone would discover her illness and force them out of their house in the slums because of fear, which is a huge part of this disease and diagnosing this disease. Her father became so desperate to save his daughter that he learned to speak English to research other options for her medical care, and that's how he came across the MSF clinic in Mumbai.

Her case was taken on at the MSF clinic, and it turns out she had a very complicated case of multi-drug-resistant tuberculosis. Unfortunately, the sputum test, which so many clinics and hospitals use around the world, cannot show the type of TB or the specific type of medication needed. As a result, they gave her the wrong antibiotics and the illness became even more resistant to the drugs that weren't strong enough to kill it, turning her multi-drug-resistant tuberculosis into extremely drug-resistant tuberculosis, obviously accidentally.

When I met this family in January of this year, they were really happy and laughing. She's healthy again after.... She's halfway through her second two-year treatment plan for drug-resistant tuberculosis. She's studying again. She says she's even more determined to be a doctor, and she wants to treat tuberculosis patients. She says she'll be able to understand how frightened they are, and how awful they feel on the drug plan, and how much they should believe in the treatment even though there's no guarantee that it will cure them.

She says she'll be the best doctor in Mumbai, and I'm inclined to agree with her on that topic.

It wasn't just a family that changed my life and inspired me; it was also the team of medical staff at the MSF clinic. They use outdated medicine and diagnostic techniques to save people's lives. Adherence to the treatment for drug-resistant tuberculosis and multi-drug-resistant tuberculosis is so low, and you can understand why. To get someone to take so much medication for such a long period of time seems virtually impossible for the medical staff. TB also affects people with weakened immune systems the easiest. These are the young and the old, the HIV-positive patients and the people with diabetes. It hits poor communities the hardest. Despite the obstacles, the medical teams were really positive and passionate and committed to what they were doing. I kept saying to myself that I wished there was some way I could help more.

There are a lot of issues that Canadians don't have to deal with. TB is unfortunately not one of them. It's a global issue. With the lack of new medicine and diagnostic tools, one of the epidemiologists I met in MSF said that drug-resistant TB was a global crisis.

I'm a really proud Canadian. That's obvious for somebody who has represented their country for so long. It's an important statement. I'm really proud of the commitment that we as Canadians make to causes such as this one. There was a $650-million contribution to the Global Fund to help with HIV, TB, and malaria. It's an incredible amount of money. What's even more impressive is that historically, every time Canada recommits to this fund they increase their support by 20%. That's something we should all be really proud of. It makes me feel even more proud to be Canadian.

In 2009 we also provided a $120-million grant to the Stop TB Partnership to launch TB REACH to help increase case detection of tuberculosis, which is really important in preventing the spread of the disease. I truly believe, however, that without more money being continually invested in research and development, TB will continue to be a global problem, with the painful and frightening side effects of medication used in the six-month or two-year treatment plan causing a lack of adherence to the drugs and causing the number of people who are struggling with the illness to continue to climb. I was telling one of my teammates that we can send people to space and we can clone animals, but we can't find a better cure or detection for an illness that impacts nine million people a year. It's kind of a crazy idea.

Without money being invested into R and D to update the diagnostic tools or techniques, patients like the girl I met in Mumbai will continue to be misdiagnosed, causing more drug-resistant or multi-drug-resistant strains of the illness to spread, or perhaps even worse, causing patients to not be diagnosed at all and to go back home to their communities, their families, their loved ones, and continue to spread tuberculosis.

I feel like we can all do something to help. As part of a Canadian campaign and a global initiative, I believe the tide can be turned on tuberculosis. Peter was saying to me this morning that this illness is preventable and it is curable. That gives me a lot of hope for the future.

Thanks.

[The Chair, Conservative, Dean Allison]

Thank you very much.

Mr. Saranchuk, I will turn the floor over to you for 10 minutes.

[Dr. Peter Saranchuk, Adviser, Tuberculosis-HIV, Doctors Without Borders]

Great. Thank you very much, Mr. Chair. Thank you, committee members, for this opportunity to speak on World TB Day.

My background is that I'm a medical doctor, originally from St. Catharines, Ontario. I've been working for over 10 years internationally with Médecins Sans Frontières, or Doctors Without Borders, so mainly in southern Africa but also in China and India. I helped to support a TB-HIV project operated by MSF in Ukraine as well.

I'd like to show a number of images to you and just talk around these images. The first is of a person who's actually sneezing. You can see when a person sneezes that hundreds, even thousands of little droplets come out. The same thing happens when someone coughs. If a person happens to have active TB disease, amongst these droplets will be some of the TB germs. The point is that TB is an airborne disease. These droplets, some of them tend to be suspended in the air not just for seconds, not for minutes, but sometimes for hours. So if the ventilation is not very good, if someone had been coughing in this room even before we all arrived and the ventilation wasn't good, some of the droplets would still be floating in the air.

The point again is that TB is an airborne disease. It's a public health threat in every single country around the world, so anybody who travels, anybody who spends time in a room with other people or where other people have been is at risk to inhale this TB germ.

It's important to distinguish between drug-sensitive and drug-resistant TB. So again, MDR stands for a multi-drug-resistant TB. It refers to a TB germ that's resistant against at least two of the more common and powerful drugs we would normally use to cure TB. So some of the differences between drug-sensitive and drug-resistant TB are that drug-sensitive TB can be diagnosed using the microscopy test that Helen referred to, so a relatively simple procedure looking under a microscope; whereas MDR-TB requires a higher-level lab. In a resource-limited setting such as a number of places MSF supports, this lab doesn't necessarily exist, so it's more difficult to make a diagnosis of drug-resistant TB.

Again, TB can be cured. It normally takes around six months for drug-sensitive TB, but it can take 20 months or more for MDR-TB. The number of drugs to cure drug-sensitive TB is four, commonly in a fixed dose combination, so an easy to take regime for drug-sensitive TB. But this number increases to six drugs including a daily injection to cure MDR-TB.

The side effects of using drugs to treat drug-sensitive TB, although they are possible, we don't tend to see them as much. Whereas with MDR-TB, the possible side effects become probable. The cost to cure one case of drug-sensitive TB is less than $100. For MDR-TB, it's over $5,000 just to cure one single case.

This is an image from the clinic that Helen visited in Mumbai. It's a woman who has active TB. She happens to have drug-resistant TB, and the second image is the number of pills that she has to take every single day, in addition to this injection. This image shows that drug-resistant TB takes up to two years to cure. It's quite a long and involved process involving again lots of pills and the possibility of side effects, sometimes quite severe, ranging from hearing loss to intractable nausea and vomiting, to mental health issues, to kidney issues and liver issues.

It's a difficult regimen to take. You can probably understand that when people start to feel better in terms of the TB symptoms they often want to stop this treatment early, the problem being that it doesn't cure the TB and the symptoms will come back again in time.

One of the most important issues is that most of the people—81%—with drug-resistant TB either are not diagnosed in the first place or are diagnosed and don't receive effective treatment. Of the 19% who do, only half are cured, so this difficult treatment regimen that I've described—up to two years—is actually only successful in curing people about half the time. You can see that most of the people with drug-resistant TB are never cured. When somebody is not cured, they tend to go on with their daily activities. They are going to work with a cough, travelling on public transport, and exposing other people to the drug-resistant TB germ.

Shown on this page is a website that MSF has helped to set up. It's called “Test Me, Treat Me”. It's a drug-resistant TB manifesto. The woman you see shown is from South Africa. Her name is Phumeza. She has a story similar to that of the patient in Mumbai that Helen described. She had TB. She did not receive the correct treatment the first time around. Her drug-resistant TB turned into XDR-TB, which refers to a drug-resistant TB that's even more resistant than MDR. She took the treatment. She was eventually cured, but in the process she developed profound hearing loss. She worked together with her health care provider to tell her story. Together, they created this manifesto that talks about all of the difficulties and the need for better treatment.

I would ask committee members, if you have time, to take a look at this website, and if you agree with what's presented there, actually sign this manifesto, which is all of us creating a voice for urgent change.

Again, the issues include difficulty in diagnosing drug-resistant TB. Even if the drug-resistant TB is diagnosed properly, many people don't actually get treated properly. When people don't get treated properly, they continue to cough these drug-resistant TB germs in communities around the world. Also again, this is a public health threat that is not going away. It's getting worse over time, not better. We need to work together, including investing more in research and development, to create a better, more realistic treatment regimen that can be scaled up, so that we can take that number of less than 20% who need the treatment and increase it to closer to 100%, such that people around the world who need the treatment actually get it.

Thank you.

[The Chair, Conservative, Dean Allison]

Thank you, Dr. Saranchuk.

Can we do two rounds of five minutes each, then?

[A voice]

Yes. That would be fine.

[The Chair, Conservative, Dean Allison]

We'll just do five minutes each. Then we can get two rounds in.

Why don't we start with you, Madam Laverdière?

[Hélène Laverdière, NDP, Laurier—Sainte-Marie, QC]

Thank you, Mr. Chair.

I want to thank both of our witnesses for their informative presentations.

I want to begin with Ms. Upperton. I agree with her statement that tuberculosis is a global issue. As I have often said, my husband has TB. It's not active, but he was around someone with TB and was exposed it.

What you're doing is admirable. Do you encourage other Olympic athletes to do the same thing?

[Helen Upperton]

Actually, I'm trying with a few of the people I work closely with. Calgary is a big centre for the winter Olympic community, and that's where I live and work right now. There are many people involved in a lot of different organizations and causes. I received a lot of interest from fellow athletes when they heard about what I was doing with MSF. MSF had previously never really had spokespeople or advocates. Much of their fundraising comes from public donations. The partnership also came about as a way to create more awareness in Canada.

We've had some discussions about potentially getting more people involved in the campaign. They do a lot of great work. My involvement with TB has come out of this opportunity to be in India where TB and drug-resistant TB are especially of concern. So I hope I'll be able to do so. I find that athletes are great spokespeople, and as I mentioned before, we are very happy to do something that contributes to the good of society, because we take a lot in order to pursue our goals in sport and it's nice to be given an opportunity to give back.

[Hélène Laverdière, NDP, Laurier—Sainte-Marie, QC]

Thank you kindly.

Dr. Saranchuk, would you say TB drugs are accessible enough in developing countries? Are there enough TB drugs to treat the disease in developing countries?

[Dr. Peter Saranchuk]

Thank you for the question.

Definitely access to drugs is a huge issue, so I tend to support TB projects in resource-limited settings, such as southern Africa, and as was mentioned, India and Ukraine. Often health care providers know that a strong treatment regimen involving four or five or six drugs is necessary, but the problem is that they might have access to only two of these drugs. So they end up giving two drugs, which is an inadequately robust regimen, and what they're actually doing is making the problem worse. This is something we need to correct.

There are three ways to treat TB. You can give the proper treatment, you can give no treatment, or you can give the incorrect treatment. Giving no treatment is better than giving a weak treatment. Unfortunately, as it stands now, I would say the majority of people with drug-resistant TB around the world receive incorrect treatment, either because they're not diagnosed on time or because those drugs just aren't available.

[Hélène Laverdière, NDP, Laurier—Sainte-Marie, QC]

That's a very interesting point indeed. Thank you.

I'm particularly interested, because I proposed a private member's bill C-398, which would have reformed CAMR, Canada's Access to Medicines Regime, so as to be able to easily export medicines, in particular for TB. Do you think that reforming CAMR to have properly working access to a medicines regime would be useful?

[Dr. Peter Saranchuk]

I may not be the best person to answer that question, just because my experience is very much international and I've only recently come back to Canada, but I would say if it can reduce the cost of these medications from $5,000 to something much more reasonable than that, then that would definitely make a big difference.

[Hélène Laverdière, NDP, Laurier—Sainte-Marie, QC]

That was the aim anyhow.

Am I finished?

[The Chair, Conservative, Dean Allison]

You are. That's five minutes. It's a short period of time.

Thank you, Madame Laverdière.

We're now going to move over to Ms. Brown for five minutes, please.

[Lois Brown, Conservative, Newmarket—Aurora, ON]

Thank you, Mr. Chair.

Thank you very much for being here. This is a very important issue and is one with which Canada is very much seized in regard to this opportunity.

You talked about the $650 million that Canada has pledged for the Global Fund. I was at that replenishment conference in Washington in December, and I was very proud to make that announcement on behalf of Canada. Indeed, it is a 20% increase over what we have given in the past. The real problem is that pledges are made but not followed through on, so we have a disparity between what we say is available and what truly comes through.

I'm sure, Doctor, that this is what you deal with in the field. I'm proud to say that our government has always paid what it has pledged. Canadians can be very proud that we have taken that initiative and have made sure that it happens.

Again, one of the very reasons why we have untied our aid.... I know that my colleague has talked about that bill, but we know that bill is never going to work because we have intellectual property rights that have to be respected. In response to that, we have said, “Let's untie our aid so that these medicines can be purchased at the best possible global price.” That's driving the price down, and we know that the access is being increased, because untied aid means that they can deal with that money in the very best way they possibly can.

I was in Bangladesh with Results Canada, Ms. Upperton. We had a little chat about that at lunchtime. I've been to those places. I've seen the desperate circumstances in which people live. The transfer of tuberculosis has to be one of the most frightening things that people are dealing with in some of these slum areas.

Doctor, one of the things that I saw in Bangladesh was the training of what they call shasta shabikas. They are women, for the most part, who are being trained to do the very elementary testing in order to have people.... They can get the results from the laboratories much more quickly than can some of the other mechanisms that are available. We've invested a great deal in maternal, newborn, and child health and one of the things that we want to see happen is trained people getting out into the field in order to help make this early diagnosis. Can you talk a bit about how that reach is happening in countries where you have been?

[Dr. Peter Saranchuk]

Thank you for the question.

This is definitely important. We can't expect all people to be able to come to health care facilities, so a large part of our work involves going into communities and diagnosing in communities. The thing about drug-resistant TB, though, is that it's a diagnosis that has to take place inside a higher-level lab. It's great that we continue to go into communities, but there has to be a transmission of the specimens. As it stands now, we collect specimens, but they still have to be transported to a higher-level lab.

We do need a better diagnostic test that can make the diagnosis in the community. Again, that has to be followed up with a much more tolerable regimen. As it stands now, we don't have a tolerable regimen—tolerable to patients and easy to prescribe by practitioners—and I think that's one of the reasons why diagnosis is still weak when it comes to drug-resistant TB. We need a better treatment.

[Lois Brown, Conservative, Newmarket—Aurora, ON]

What level of expertise does one need in order to make that diagnosis? Is it a doctor, a nurse, or a community health nurse who can do that? What level of expertise do you need?

[Dr. Peter Saranchuk]

Definitely within Médecins Sans Frontières in our projects, we agree with task-shifting, with taking tasks that are normally done by a higher-level health care worker and having a lower-level health care worker do them. These lower-level health care workers can certainly screen for TB symptoms and collect specimens, but the end result is that this testing has to take place in a high-level lab, usually by way of using expensive equipment in that lab. So in our projects, we tend to have to support labs, in addition to supporting this community-driven diagnosis as well.

[The Chair, Conservative, Dean Allison]

Thank you very much.

Mr. Garneau, you have five minutes, sir.

[Marc Garneau, Liberal, Westmount—Ville-Marie, QC]

Thank you, Mr. Chair.

Thank you to both of you for coming today, and thank you for the work you're doing with respect to TB and other medical problems.

I don't know very much about it. I do know that my wife, who's a nurse, had to take the pills for six months. I can't remember exactly what her situation was, but I recall that she did have to go through that.

What's the prognosis for somebody who never gets treated? What happens to them? Do they invariably end up dying, or what happens?

[Dr. Peter Saranchuk]

That's a very good question.

Of course 100 years ago, when there was no treatment available at all, a third of people would spontaneously cure, another third of people would get sick and die, and the last third would go on to develop chronic TB symptoms. They would be transmitting the TB germ to others.

In this day and age we have a new wrinkle, and that's called HIV. People with HIV almost invariably, if they develop active TB, will go on a downward course and eventually die. The thing is that before they die, they tend to transmit that TB germ to...well, it depends on the community, but often to dozens of other people.

[Marc Garneau, Liberal, Westmount—Ville-Marie, QC]

If we have a truly concerted and unified and coordinated effort worldwide, is this a medical disease that we can eliminate?

[Dr. Peter Saranchuk]

There are two answers to that question. One is drug-sensitive TB, which is curable at a relatively low cost and has a tolerable treatment.

This is possible for drug-resistant TB, although with the current regimen we have available we're just not able to give that treatment to everybody who needs it. As a result, we see an increasing rate of drug-resistant TB amongst the total amount of TB cases in many countries around the world. Some countries are worse than others, specifically in eastern Europe and central Asia, and India as well. In some countries you can buy TB drugs over the counter. People with a cough will go into a pharmacy, buy these pills to make their cough better, and in the process contribute to the development of drug-resistant TB.

[Marc Garneau, Liberal, Westmount—Ville-Marie, QC]

It's one thing to try to get the medicines to people who have drug-resistant or drug-sensitive TB, but what is the role of research in this? Is there the potential for research suddenly finding a solution that will make this much more easy to treat and perhaps eliminate, or has everything been tried with respect to research?