Summary of Roundtables on R&D for Neglected Diseases

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1 Summary of Roundtables on R&D for Neglected Diseases TABLE OF CONTENTS Introduction... Error! Bookmark not defined. Canada s Medical R&D Successes... Error! Bookmark not defined. Challenges... Error! Bookmark not defined. Reaching Patients... Error! Bookmark not defined. Including Know How from the South... 3 Building Global Networks... 3 Availability of Data... Error! Bookmark not defined. Opportunities... 4 Building on the Canadian Specificity... 4 Private Sector Funding... 4 Earmarking Funding for TB... 4 Connecting with Canadian Issues... Error! Bookmark not defined. Developing a Network with Indigenous Communities... 5 Engaging the Public and Voters... 5 Involving Patients in Advocacy... 5 Areas for Further Exploration... 5

2 Introduction A roundtable discussion was held on September 29, 2017 at the University of British Columbia to discuss the state of funding for global health research and development (R&D) in Canada. Two staff from RESULTS Canada led the session with eleven participants either present or calling in. In addition, three interviews were conducted in Montreal at McGill University on the same topic. This report summarizes the main challenges and suggestions discussed both in terms of funding R&D and the challenges researchers face in doing R&D. Any information included in parentheses [ ] is additional information that was not specifically stated by roundtable participants. Canada s Medical R&D Successes Historically, Canada has some of the most impactful health innovations in the world. The Nader Report demonstrated that Canadian research and development is of very high quality, even though funding has decreased. This decrease in funding over the past 15 years can be observed in contrast to all other G7 nations. The strength and pride of the Canadian medical R&D sector is something that can be rallied around. The general sentiment among participants was that Canada could and should take a leadership role in global health research and in TB in particular. Challenges Reaching Patients Researchers become frustrated if they develop new products and these do not reach patients in need. The perception, especially in the world of TB R&D, is that while there are new products created, they are not always used or they only reach a small population, which is discouraging. This issue can also ultimately undermine advocacy efforts for TB R&D funding. Researchers feel that it is difficult to be innovative in TB because the system is very controlling. Doctors try to control their patients, the program is trying to control the drugs doctors prescribe, the WHO is trying to control the program and this is all very restricting. Policies must be developed to ensure that when there are new products there are mechanisms in place to ensure that they get to the people who need them. There are also challenges in getting drugs registered in some countries and they cannot be accessed by patients until they have completed trials. However, the drugs (for example, Bedaquiline) may already be available elsewhere. The regulatory processes are problematic. Finally, donor countries need to work towards keeping drug prices down in developing countries. For instance, the cost of medicine is a huge barrier in Hep C. Canada already does a better job than the US at capping prices. Government intervention is needed to keep prices down.

3 Opportunity: Canada could be a leader in intellectual property. Additionally, Canada could play a role in assisting other countries in developing their regulatory framework and policies. Canada could provide assistance to other countries to implement new strategies such as expanding the distribution of antibiotics. Making the Public Case for Canadian Investment in Global Health R&D [It is often assumed that TB is a disease of the past, or at least one that does not exist within the borders of high income countries such as Canada]. The Canadian government however has an immigration policy that pulls in immigrants from parts of the world where TB exists, and Indigenous populations in Canada also suffer from TB. Therefore, Canadians can be affected either directly or indirectly by TB. [With low levels of TB awareness, and insufficient technologies to diagnose and treat TB, even in Canada, TB will continue to persist]. Despite relatively low rates of TB in Canada, Canadian health professionals need to be able to appropriately diagnose and treat newcomers, members of Canada s Indigenous communities, [and all patients suffering from TB]. For these reasons, Canada should have an interest in funding TB R&D. CIHR generally specifies that its funding is intended to fund Canadians and permanent residents, however new immigrants are likely to be highly educated and maybe coming from areas where there is a high prevalence of TB. Making funding available to these populations could help create valuable global partnerships. Building Global Networks Canadian researchers need to work more closely with other actors in global health and the communities for whom they are doing the research. Some funding bodies have clauses in their research grants that require applicants work closely with representatives from the community or country for whom their research will be affecting. Additionally, the CIHR Act states that the CIHR should be an internationally acknowledged leader in contributing to the global advancement of health research and that excellence in health research is fundamental to improving the health of Canadians and of the wider global community." CIHR fulfills its mandate, in part, by "pursuing opportunities and providing support for the participation of Canadian researchers in international collaborations and partnerships in health research." Linkages with immigrant communities could be an opportunity to develop a global network. However, many researchers have had difficulty connecting with other researchers on the ground. There is an opportunity to build networks through the diaspora. This may be by assisting new immigrants transfer their credentials so they can work in their field in Canada. Additionally, this can be done by engaging international students who study in Canada and helping them keep that connection when they return home to work. Availability of Data Some researchers have had difficulty accessing demographics data to test products or to see how products or research are currently impacting a population. Another group overcame this challenge by collecting data themselves [though understandably, this may not be feasible for all research projects]. Finding consistent data is a challenge. When private organizations are collecting data and their funding comes to an end, they leave, resulting in a gap before data is collected again. This happens when there is

4 no national data collection mechanism. Another challenge is ensuring that one is able to access data from the most vulnerable populations, as rates of diseases differ amongst different groups. Opportunities Building on Canadian Specificity The Canadian Institutes of Health Research (CIHR) receives around 1 billion dollars annually and its mandate is focused on Canada. Alternatively, NIH receives around 1 trillion dollars, which makes Canada lag significantly behind its southern neighbour. The Prime Minister had mentioned wanting to distance Canadian foreign policy from America s influence. One way to do this would be to become a leader in health by making larger investments in global technology and health. When the US and President Trump decided to discontinue funding for global sexual health and abortion work, Canada publicly declared that it would pick up the slack. A similar approach is possible in the area of R&D. Private Sector Funding There is a significant difference between medical R&D funding from the United States and Canada. This difference is in part explained by the voluminous amount of private sector funding in the US. The lack of private sector health funding in Canada may be because some researchers in Canada have restrictions as to who they can receive funding from or they may not want to engage the private sector. Private funding may undermine the legitimacy of a study or research. Private funders may want to invest in a product that will need to be manufactured over a long period of time (for example, HIV drugs) while if it s a one time investment to eradicate something they may not be interested. They may not see certain types of research or products, such as those for TB, as a good return on investment. Areas to Explore: How can the Canadian private sector be engaged? Are they able to bring a significant amount of funding to R&D and if so, would they only be interested in funding more common diseases such as cancer and heart disease? Earmarking specific funding for TB Funding bodies have their priorities set out. While HIV might get its own budget line, TB often does not (ex. CIHR). There may be a need to advocate to specific funding bodies to include TB, not just the whole of the Canadian government. Connecting with Canadian Issues While CIHR s policy is to benefit Canadians, it should be noted that Indigenous populations in Canada also suffer from TB at levels comparable to those of many developing countries. Canadian institutions should therefore have an interest in funding TB. Simply put R&D for TB is also in our self interest. This may tie in to the larger government goals of reconciliation with Indigenous Peoples.

5 [The Truth and Reconciliation Commission s Call to Action 19 includes a call, to establish measurable goals to identify and close the gaps in health outcomes between Aboriginal and non Aboriginal communities.] Developing a Network with Indigenous Communities Indigenous groups need to be included in the R&D that involves their communities. There is a need to incorporate the participation of the Indigenous peoples of Canada and perhaps create a committee to provide guidance on this. The Global Indigenous Stop TB Initiative is being strengthened by connecting Indigenous Peoples from the Americas, but there isn t yet a strong point of contact to connect these groups. A stronger network is needed among advocates for TB and for Indigenous Health. Engaging the Public and Voters Voters and policy makers need to better understand social determinants of health and how poverty and illness are connected. By understanding the economic benefits of improved health, they may be more interested in funding health related R&D. Pitching to voters that they need to back policies supportive of funding for global health may be a challenge. However, it can be framed as something that benefits society at large through overall advances in the health field, the reduction of poverty, and a globalized and connected medical community. It is important for researchers and medical professionals to be able to communicate scientific information to average Canadians. Knowledge translation is a buzzword in the science world right now and emerging as a new area of study. Including scientists into advocacy groups could help them build this skill. Involving Patients in Advocacy Funding for TB currently does not reflect certain patient experiences, for example when a TB patient is forced to be in isolation at a hospital but the cost of staying at the hospital is not covered by the State. Including these personal stories will strengthen the case for funding TB R&D. Areas For Further Exploration Canada has adopted a feminist foreign assistance policy. Women are deeply impacted by TB for a variety of reasons and women are central to health care provision in households. TB is a family centered disease and women are the people who plan for the family. In a similar vein, girls are getting sick between the ages of 11 13, when TB activates, and those are their peak years of productivity when they should be at school. A platform that could test for HCV, HIV and TB would connect to a feminist foreign aid policy. Additionally, there is a lack of research for affected pregnant women and the effects of new drugs on pregnant women. More research on this topic would be totally in line with the government s feminist lens. Children and Youth: When children contract TB they often show symptoms right away. As such, they can be indicators of the rate of TB in a community. It would be valuable to address TB among children to lower overall rates in a population. It is worth noting that there are also challenges in addressing the needs of adolescents who are often excluded from clinical trials.

6 Institutional Support to Global Health R&D: Is it possible to consider setting up in Canada an institution similar to the National Institute of Health s Fogarty International Center in the United States? This could increase capacity in host communities and focus attention on Global Health R&D. Canadian TB Elimination Network is a new organization that has just begun to hold initial meetings. As they grow, their action may be worth monitoring and supporting. CRISPR is a cutting edge technology working in the area of gene editing. Investing in this could make Canada a global leader in genomics and could bring in private sector funding, perhaps from outside of Canada. Canadian biotech companies: A number of Canadian biotech companies are successful that are doing research with their own funding. It is important to include them in conversations about Global Health R&D to identify potential opportunities.