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4 Needs, Opportunities, and Next Steps The broad strategies described in previous chapters of this workshop summary for expanding the quality of care and making do with less are practical, real-world examples of local ingenuity. They offer a promising way forward and provide possibilities for linkages among different communities. But workshop participants highlighted the reality of treat- ing mental health, neurological, and substance use (MNS) disorders in sub-Saharan Africa (SSA), where resources fall far short of the need, and in order to get those resources, leadership is needed that will make re- source acquisition a priority. How do you get the decision makers involved in the process? “There are two ways,” noted Michelle McMurry, director of the Aspen Insti- tute’s Health, Biomedical Science and Society Initiative. “One, you can persuade people who do not have an interest in your area to become in- terested in it. Or, you can co-opt people: You can convince people that their priorities also apply to your priorities.” The interrelations between mental health and the endemic diseases of SSA provide that link, and were a major focus on the “way forward” part of the discussions. NEED FOR SUSTAINABLE, FEASIBLE STRATEGIES Workshop participants emphasized that whatever plans or policies are put in place, they must be part of sustainable, feasible strategies. Cre- ating a program where people are trained for a week and then sent off to do their job just does not work. To make lasting change, a system of su- pervision and support needs to be in place. Similarly, a one-time dona- tion of psychotropic drugs is not enough; what happens to the patients when those drugs are all distributed and there is no system in place to 51

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52 MNS IN SUB-SAHARAN AFRICA, IMPROVING QUALITY OF CARE ensure a continuity of care? No one at the workshop identified any “quick fixes,” and participants repeatedly cautioned that the battle for improved MNS care in SSA was a long one that needs to be thought through from the very beginning. Luckily, there are models to learn from, such as the way care and funding have been provided and used to treat HIV/AIDS and malaria. COLLABORATION Rather than one country or one organization addressing MNS issues independently, workshop participants spoke of the need to collaborate and cooperate with researchers and healthcare providers around the con- tinent and across disease specialties. “I think we can begin to collaborate in Africa by looking at common problems and finding common solutions and working together,” said Njamnshi from Yaoundé Central Hospital, Cameroon. HIV was one area that was mentioned again and again as an important area to look at to see if the current interest and funding for HIV care can be used to improve care for MNS disorders. “It is very true there is a lot of money in HIV, but we should take advantage of that money to improve the infrastructure across the board,” said Makerere University’s Katabira. He noted that the current call for proposals from the Global Fund allows for infrastructure development. The improved health facilities would not only take care of HIV patients but would also address the needs of all patients. “I think we need to be innovative and take advantage of HIV at the moment to use the resources which are available,” said Katabira, “because they are not going to be there indefi- nitely.” However, integration of MNS care should not be limited to HIV/AIDS. Programs that support malaria and tuberculosis should also be leveraged to be better integrated with the primary care of individuals, and each of these offer lessons that can better assist in the development of more comprehensive MNS care (Box 4-1). Research Needs Coincident with efforts to improve treatment today, workshop par- ticipants noted a significant need for research and data that would help guide the development and implementation of MNS policies. Workshop participants noted various areas that would benefit from further research efforts. Systematic epidemiological data are sparse or nonexistent in

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NEEDS, OPPORTUNITIES, AND NEXT STEPS 53 BOX 4-1 Lessons to Be Learned from the HIV/AIDS and Malaria Treatment Models HIV/AIDS Treatment Model Through the years of diagnosing and treating patients with HIV/AIDS, a number of strategies have emerged, which Makerere University’s Angela Kakooza-Mwesige noted can be lessons for those involved in the diagnosis and treatment of mental health, neurological, and substance use (MNS) dis- orders. First, one of the reasons HIV programs have been successful is that they encourage the use of community-based counseling and testing to drive the early identification of disease. “If we adopt this strategy,” Kakooza- Mwesige said, “we will have the opportunity for early identification of those with associated mental or neurological conditions or infections that affect the [central nervous system].” Additionally, many HIV programs are based on a comprehensive service package that uses the HIV-positive patient as an entry point for providing care and accessing dialogue with the whole family. By addressing the whole family, health workers are able to look for acute infections and manage op- portunistic infections, which benefits both the HIV/AIDS patient and their family. Translating this type of model to MNS disorders means that once one person in the family is seeking treatment, the health workers would be able to help manage any other MNS disorders affecting the family. Supported by an array of centers to train for the diagnosis and treatment of disease at all levels of the healthcare system–—another concept borrowed from HIV—this would drive MNS diagnosis deep into the rural communities where it is most needed and most lacking. Malaria Treatment Model The control strategies for treating malaria are early recognition and di- agnosis, with prompt effective treatment. An emphasis has been put on the importance of managing fevers at the community-care level, strengthening the health system, integrating vector control, and managing cases effec- tively. The message is that community interventions are vital to the treatment of disease, and that early screening and identification of vulnerable popula- tions is critical to better outcomes and the proper allocation of resources. Malaria is truly a disease where treatment modalities have been pushed to far-reaching levels, although more work needs to be done. The use of community drug distributors in countries like Uganda to try to ensure medica- tions are available when and where they are needed is an important step. This is a critical lesson for MNS disorders, where (as discussed) drug com- pliance is a critical factor to patient outcome. Ensuring access to drugs and compliance with prescription regimens will be critical to the success of any MNS program.

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54 MNS IN SUB-SAHARAN AFRICA, IMPROVING QUALITY OF CARE many countries in SSA, especially for children. Without reliable data on the true prevalence of disease, it is difficult to convince policy makers of the importance of putting money toward the training of personnel and purchasing of medications. Unfortunately, researchers do not have data on the cost-effectiveness of such prevention and treatment programs. One workshop attendee noted, “We have not collected sufficient information on the pay-offs of effective, appropriate, [and] affordable interventions. . . . We seem to have enough information on the cost of providing services, say, to myself as an individual, but we do not have the information that we require to convince policy makers and finance ministers of the value of preventing [MNS].” Investing in the treatment of MNS disorders will help the vil- lage, the community, and the country as a whole. The ability to illustrate that benefit is what will convince policy makers to act. The Role of Advocacy and Public Communication Participants stressed that in order to engender serious change, the is- sue of treating MNS disorders in SSA needs to come to the attention of a wide range of people, from community organizers to heads of state. One way to do this—as demonstrated with HIV/AIDS—is to show how the care of MNS disorders is fundamentally a human rights issue. To date, this has not been done. As Wellcome Trust’s Patel said, “I think we have completely missed the opportunity of getting this issue out there . . . not as a medical issue alone—which of course it is—but as a fundamental human rights issue.” Workshop participants pointed out opportunities for mass communi- cation, for example by integrating stories into television series or the solicitation of newspaper articles on the myriad of topics. “Sitting in Toronto or New York, you don’t realize how much television there is in [SSA],” said Njenga of the African Association of Psychiatrists and Al- lied Professionals. “And the print media is always pushing for bits and bits of pieces of information.” Radio is also a well-used media outlet in SSA. Kenya alone has 46 regional radio stations, each targeting specific age groups, languages, faiths, and interests. They could be an important tool for communicating directly to the patient population. All of these different media channels can be used to get information about MNS disorders and treatments out to the public—breaking down the stigma associated with MNS disorders and encouraging those who need treatment to seek help (Box 4-2).

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NEEDS, OPPORTUNITIES, AND NEXT STEPS 55 Through public education, the level of discussion about what treatments are available, how they are delivered, and how they are all paid for can also be raised. Of course, public service announcements are not enough. Policy makers need to become engaged and involved, and this point was con- tinually reiterated by attendees. For example, in Zambia, the vice presi- dent’s wife has become the patron of Zambia’s epilepsy association and the vice president opened the recent conference on stigma associated with epilepsy. This type of high-level involvement brings attention to disorders that are largely ignored or actively shunned by the general pub- lic. But it is also important to bring research to policy makers. Policy makers—be they healthcare oriented or not by mandate—need evidence on which to base their decisions. One workshop attendee noted, “It is very clear that the Ministry of Health and the Ministry of Finance do not have the evidence that paid community health workers are better than unpaid community health workers. We need to get our evidence right to the top.” Opportunities for Decreasing the MNS Treatment Gap and Improving Quality of Care Numerous individual suggestions were made throughout the workshop about how to decrease the treatment gap and improve quality of care. They are compiled here as part of the factual summary of the workshop and should not be construed as reflecting consensus or endorsement by the workshop; the Forums; the National Academies in Washington, DC; or the Ugandan National Academy of Sciences. Investigating details about the feasibility and implementation of these ideas were beyond the scope of the workshop. They are as follows: • Recognize the related nature of MNS disorders and thus lev- erage limited resources across the wide (and integrated) range of MNS disorders, helping patients who need care. • Establish comprehensive policies for MNS disorders and not a patchwork of policies for mental health, neurology, or substance use. Policies should address not only strategies to decrease the treatment gap and improve quality of care for MNS disorders, but also to support research programs that develop data needed to help guide the development and implementation of MNS policies.

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56 MNS IN SUB-SAHARAN AFRICA, IMPROVING QUALITY OF CARE BOX 4-2 Patient Advocacy: Kenyan Association for the Welfare of People with Epilepsy The Kenyan Association for the Welfare of People with Epilepsy (KAWE) was established in 1982 by the parent of a child with epilepsy. It provides an example of how careful thought about mental health, neurological, and sub- stance use issues can combine with passionate commitment to improve the lives of patients in the sub-Saharan region (KAWE, 2010). KAWE is now a non-governmental organization with six volunteers on the Board of Directors and eight employees. The association envisions a Kenya in which people with epilepsy are free from stigma and able to access quality care from the gov- ernment and other public health facilities. Its mission is to improve the quality of life of people with epilepsy and allow them to realize their full potential through a sustainable, comprehensive, and integrated program that is afford- able and accessible to people suffering from epilepsy in Kenya. KAWE’s three main programs encompass training, education, and awareness; medical pro- vision and clinical support; and lobbying and advocacy. KAWE’s training program reaches all levels of healthcare providers— doctors, clinical officers, nurses, and community health volunteers—and trains them in epilepsy management. They do this because of the scarcity of physicians in rural settings. “Ninety percent of the doctors that are trained do not want to work in the rural areas. That is a fact that you are not going to change—at least not in my lifetime and not in many of your lifetimes either,” said KAWE chair Osman Miyanji. “You still have to train people on the ground. The doctors are not going to walk out in the field. So, we have to rely on public health nurses, we have to rely on clinical officers and even the lower volunteers to help us.” Miyanji reported that over the past 6 years, KAWE has trained more than 2,235 community health workers and 849 medical personnel (Miyanji, 2009). KAWE also produces publications, posters, and videos to help with edu- cation about epilepsy. These materials, along with mass-media campaigns, speeches, and community outreach, are used to raise awareness among the public. In the area of medical provision and clinical support, KAWE runs three weekly clinics in Nairobi that see 4,000 active patients out of 10,000 registered. Drugs are provided on a cost-shared basis using a sliding scale. Miyanji ex- plained, “[Most patients] are on simple drugs and 80 percent of our patients are well-controlled. This would be comparable to anywhere in the world in the best clinics. Eighty percent control of epilepsy is fantastic. And most of them on are monotherapy and only a few are on dual or triple therapy.” But beyond the clinic and the training room, KAWE is also active in lob- bying activities to influence the Ministry of Health in Kenya. KAWE’s training and educational materials have been recognized by the Ministry of Health and they continue to work together. “We are developing national guidelines

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NEEDS, OPPORTUNITIES, AND NEXT STEPS 57 for epilepsy with the help of the Ministry of Health and we are working with the Division of Non-Communicable Diseases in the Ministry of Health,” said Miyanji. KAWE is an example of how an advocacy group can grow from one parent—one voice—to a group with great influence and have a real effect on the lives of people living with epilepsy. • Promote high-quality MNS research that will provide evi- dence to inform health policy. These data would be used to demonstrate the devastating effects of MNS on the lives of Afri- cans and on the economy of Africa. The data would inform pol- icy decisions and help direct necessary resources toward MNS. • Improve the integration of basic diagnosis and treatment of MNS disorders into primary care. Diagnosis and treatment of MNS disorders should be part of a much larger integrated health network that leverages the strengths of existing infrastructure and resources. • Leverage established infrastructure that is already in place around HIV/AIDS, malaria, and tuberculosis to raise awareness of associated MNS disorders, improve diagnosis, and establish better treatments and care. • Educate the public and providers and reduce the stigma as- sociated with MNS disorders. To minimize the stigma (shame and fear) associated with MNS disorders, it is important to edu- cate the public and healthcare providers that MNS disorders have a biological origin and are treatable medical conditions. • Increase the number of trained professionals with expertise in MNS disorders. The existing treatment gap is in part a result of the dearth of healthcare professionals with any training in MNS disorders. Utilize task shifting as one such strategy to in- crease the number of trained specialists. • Develop continuing education (further education) require- ments that will ensure healthcare providers, MNS specialists and nonspecialists, are providing the most up-to-date care available. • Establish and use information technologies, including mobile technologies, to improve care. Develop diagnostic, treatment, and continuing education training modules for MNS disorders that can be used by all healthcare providers, not only MNS specialists.

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58 MNS IN SUB-SAHARAN AFRICA, IMPROVING QUALITY OF CARE • Establish student loan reimbursement/forgiveness programs. These would provide an incentive for healthcare providers (e.g., doctors, nurses, and other community health workers) to seek MNS training and serve underserved communities. • Formalize community healthcare providers as an integral component of the health system. Provide appropriate training and continuing education for these providers. • Develop pilot programs that can examine different strategies to integrate care between Western and traditional medicine practitioners. Improve communication and coordination be- tween Western and traditional medicine practitioners to provide better comprehensive care. • Improve the formulary of medications to treat MNS disorders and establish demonstration projects to improve the reliable avail- ability of medications in rural areas. Using collective bargaining agreements, such as through the International Dispensary Associa- tion, may help reduce the cost burden associated with improved formularies. Access to drugs and compliance with prescription regimens are critical to the success of any MNS program. • Establish an ongoing convening activity to facilitate an Afri- can continent-wide collaboration and co-operation in the care of MNS disorders. This group should include a broad spectrum of stakeholders who would be brought together on an on-going basis to discuss issues of mutual interest and concern. It could also be utilized to help inform and advise governments and African politicians in the establishment of MNS policies. NEXT STEPS The workshop concluded with reasoned hope. The discussions re- vealed that many of the pieces required to significantly improve the qual- ity of care for MNS disorders in SSA already exist. There is a will to im- prove; there are examples of both successes and failures to draw from; new technologies are available; and, thanks to the workshop, there are new regional dialogues and crossborder synergies that can form the foundation of future progress. Much work remains to be done. Efforts are in their infancy, and enormous challenges exist around funding, logistics, and infrastructure. But workshop participants outlined the broad work to be done and how new, systematic MNS treatment programs should work.

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NEEDS, OPPORTUNITIES, AND NEXT STEPS 59 As a first principle, participants believed that any broad effort to ad- dress MNS disorders should consider all disorders of the nervous system, including addictive disorders. There is no need to recreate the disease “silos” seen in many developed countries, where psychiatric disorders are separate from neurological disorders and both are separate from sub- stance use disorders. Participants said new programs should focus both on treatment and prevention. Without that dual focus, any advances may be too easily un- done. Critical areas for further study include epidemiology, treatment efficacy, and cost-effectiveness. The latter, many noted, will prove to be especially important as efforts are made to secure additional funding. “We don’t have access to nearly enough data to make the case for effec- tiveness and ineffectiveness,” said Alan Leshner, Institute of Medicine Neuroscience Forum Chair and chief executive officer of the American Association for the Advancement of Science. “Just as we need to be able to show what works and what we have been able to accomplish, we need to be able to show policy makers that we know that not everything works, not everything is a good idea. And we need to present an argu- ment that separates what works from that which does not work, and then we can advocate for that.” Much can be learned from the treatment of other diseases, including HIV/AIDS and malaria. The influx of funding that targets these diseases has created a living laboratory of what works and what does not, and it will be critical to leverage the skills, networks, and lessons learned from these programs as new MNS programs are shaped and promoted. Cooperation, rather than competition, is the only way to improve care for everyone. If serious progress is to be made, there must also be cooperation across borders, particularly in areas such as education. As Baingana noted, rather than duplicating training programs in each nation, countries could send students to other nations where programs already exist. If Kenya has a training program for psychiatric social work, and Uganda does not, instead of spending money to develop a school in Uganda, those students could study in Kenya. “At the School of Public Health we have various initiatives where we come together as East Africa,” said Baingana. Training, however, needs to start at the roots of the system. Community- based programs that integrate MNS care into the primary care system will provide the highest quality of care. To do this successfully, pro- grams must be established to ensure quality training for health workers throughout the system, from the community health worker up to the hos- pital providers. The role of traditional healers cannot be ignored either.

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60 MNS IN SUB-SAHARAN AFRICA, IMPROVING QUALITY OF CARE Participants supported healthcare workers being paid and supported to ensure a higher continuity of care. As Leshner commented, “Stipend- ing of the community health workers is an essential phenomenon. You cannot do it with volunteers alone.” Participants also believed technology has a key role to play in sup- plementing this education, be it via mobile phone applications or Internet or DVD-based training or educational materials. As Leshner said, “There are a lot of ways in which we can do a better job of putting information in accessible and understandable ways and [of] find[ing] ways in which to use information technology more concretely.” The formulary of medications to treat MNS disorders needs to be improved, and demonstration projects need to be established to improve the reliable availability of medications in rural areas. Major, broad im- provements to the quality of MNS care in SSA are a major challenge, but they are not insurmountable. As mentioned, many of these pieces are in place, and the outlines of future research and programs are also in place. What is most needed now is the support to drive them forward. Throughout the world, advocacy plays an important role in improv- ing care in all diseases, and this situation is no different. Champions are needed to bring relevant issues in front of the people who can make the needed changes in each country. “There needs to be a voice in leadership at the policy level, and there need to be advocacy groups that will argue these causes,” pointed out Leshner. But leaders are needed at the local levels as well. Leshner went on to say, “My own experience is that advo- cacy by patients—by members of patients’ families—is the most effec- tive form of advocacy.” Educating the general public about MNS disorders is an important step to fighting the stigma that afflicts patients with MNS disorders. Change is a long process, but by continuing the hard work that has al- ready begun, advances can and will be made—and the goal of providing quality care to those suffering from MNS disorders will be achieved.