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Since its recognition in 1981, the HIV and AIDS epidemic has been a defining factor in the financing of health across Africa. The reasons are simple: AIDS is exceptional. It primarily infects adults; it is incurable; if untreated, death results; and while treatment is available, it is complex and expensive.
When the Millennium Development Goals (MDGs) were adopted in 2000, they did not explicitly address disability, but we know that the scourges of disease, poverty, inequality, and discrimination impact people with disabilities at alarming and disproportionate
rates. Numbering more than 200 million globally, people with intellectual disabilities are the largest disability group in the world. To tackle the problem of extreme poverty without taking into account this population is to disregard their rights and limit the chance of successfully fighting disease, poverty, intolerance, and injustice. If MDG targets are to be met, our efforts must focus on those who need them met the most — people with intellectual disabilities.
Consider just one story. Aaron is a nine-year-old boy from sub-Saharan Africa. Last year, Special Olympics volunteers found him tied to a tree like an animal outside his family’s home, held there because there was nowhere for him to go and no one to help his impoverished mother. He had been “tied” by his parents for seven years. It was their only method for managing the demands of their child while also raising four other children. Aaron’s parents did not tie him out of malice; they tied him out of desperation. For too many parents across the Global South, this is the only standard of care they can offer to their children. The impacts on Aaron’s health, development, and social skills — essentially his future — are chilling.
Aaron is not alone. People with intellectual and developmental disabilities are disproportionally represented on virtually every indicator of hardship, disease and discrimination. The vast majority of children with disabilities do not attend school. While this is obviously detrimental to their ability to function and grow academically, the negative impact goes far beyond education. Schools are often the primary venues for immunization drives and health education initiatives. If people with disabilities are not in school, they are highly unlikely to receive these services and the broader networks of services are not equipped to handle the gap in access. When they do access medical services in the wider community, people with intellectual disabilities are routinely denied care or given substandard treatment due to the lack of training of healthcare professionals.
People with disabilities are also much more likely to be abused both physically and sexually, leading to a multitude of problems. As many as 83 percent of women with intellectual disabilities have been the victims of sexual assault; 68 percent have been abused before the age of 18.(2) In addition to the psychological and social consequences, this abuse also puts them at increased risk of severe health problems including HIV/AIDS.
Disability is both a cause and an effect of poverty and disease, creating a cycle of poor health, poor opportunities, and poor understanding among policy leaders. Generally, people with intellectual disabilities are simply ignored, left to endure more physical pain, more social isolation, and ultimately premature death.
Leaders of government, society, business and culture must confess that together we have failed to understand the pervasive inequality facing people with intellectual disabilities — economic, social, and cultural. Subsequently, we must commit to correcting this failure and bringing about the more just world that the architects of the MDGs had in mind.
Reaching the Goals
Reversing the age-old prejudice and inequality faced by people with intellectual disability will be an arduous journey, but there are specific actions that leaders can and must take now as the first steps.
Fully Embrace the U.N. Convention on the Right of Persons with Disabilities: Ratified in 2006, this convention marked significant progress in recognizing that people with disabilities have the same inalienable rights as all other members of the human family. It calls for all nations to utilize all the tools available, including legislation, budgets, and social tools, to mainstream disability issues as an integral part of development plans and push for inclusion of people with disabilities into all aspects of society. I urge all leaders at all levels and across all sectors to embrace both the spirit and the letter of this groundbreaking document.
Make people with disabilities “count”: When the data is examined, it can be seen that our statistical outlooks mask moral and practical failures. How many people in a particular developing country have intellectual disability? How many of them are left without education? How many of them are infected with the “big three” — HIV, Tuberculosis, and Malaria? The answer to these questions, tragically, is we don’t know, we don’t know, and we don’t know. I urge leaders around the world to include people with disabilities in censuses, research efforts, and tracking mechanisms. I urge global leaders to encourage and support countries to gather and use good, disaggregated data, to better track the status and accelerate the progress for those still being denied the help and the care that they need.
Partner with organizations that stand ready to help: Special Olympics offers extensive health programming, providing free health screenings and follow-up care in more than 100 countries. Since the inception of its “Healthy Athletes” program, Special Olympics has become the world’s largest public health organization specifically for people with intellectual disabilities and maintains the largest database anywhere on the health status and needs of this population. And Special Olympics represents just one organization with the willpower and resources to help — there are many others. I urge leaders to reach out to and accept the assistance offered by others.
Integrate people with disabilities into future benchmarks: When the new Millennium Development Goals are written, I hope a fearless team will insist that they focus not just on general targets, but rather on how to reach the hardest to reach, the poorest of the poor. I hope the team will succeed in demanding a focus on the excluded and demand that a proportionate share of the world’s effort be for those with intellectual disabilities. I urge leaders to use whatever influence they have to ensure that the next goals are more inclusive of people with disabilities.
Help people with disabilities be heard: Whether it be a UN committee helping draft the post-2015 MDG framework, or a social justice or health-related committee advising on the national or regional level, I urge all leaders to use their influence to ensure that people with intellectual disabilities have a seat at the table. Perhaps we will need to slow down the meetings a bit so that the voice of those at the bottom can be heard but the benefits will be glorious. I am sure that people with intellectual disabilities will shame the powerful with their wisdom and silence the wise with their spirit. We must demand at least a proportionately equal share of voice for people with intellectual disabilities.
The task of reaching the most disadvantaged is a daunting one. To untie the shackles of millions will be a painful and deep one. Despite the difficulty, however, I am optimistic that together we can muster the ideas and the grit to change the course of human history. In this quest, we ask not that you be perfect in all that you do but rather that you be faithful to the belief that we can all do something.
Take that first small step. It is larger than we think for a population paralyzed by global inaction. GHD
On the eve of World Tuberculosis Day in 2009, 1.8 million youth from all over Afghanistan marched to express solidarity for tuberculosis patients and their families. This was the most successful contribution by a country
in the Eastern Mediterranean region, and only one of the various events the Afghan Ministry of Public Health has been introducing as part of its educational program to raise awareness of tuberculosis in the country.
Tuberculosis has been threatening Afghanistan for decades. As the second highest tuberculosis-burdened country in the Eastern Mediterranean region, Afghanistan is also one of the 22 countries with the highest rates of tuberculosis in the world. Too many people die every year from this curable disease, yet tuberculosis is often treated as a taboo. At the Ministry of Public Health, we are convinced that education is crucial in stopping the spread of this silent killer.
It gives me immense pleasure and satisfaction when I see progress of tuberculosis care and control in Afghanistan. The Afghan health sector development faced immense challenges at the beginning of the century, including inadequate tuberculosis control. However in 1954, adopting the Global Stop Tuberculosis Strategy, the Ministry of Public Health developed the National Tuberculosis Control Program. The program is a comprehensive national strategy to combat this deadly disease that has proven to be a very challenging epidemic to tackle.
Although tuberculosis is a curable disease it still carries social stigma and myths associated with it. For over a hundred years, the disease has been considered an illness of the poor and those with imprudent social behaviors. Then, a tuberculosis diagnosis was often accompanied by death.
What people don’t know is that nowadays, tuberculosis is a preventable and curable disease. Patients and their families throughout the world continue to face discrimination because of inadequate education and low awareness of the progress that has been made in treatment of the disease. Other challenges associated with tuberculosis control are low case detection, little community involvement, a lack of empowerment of people affected by the disease, and low political commitment and resources for tuberculosis control.
To change these perceptions and educate the public about tuberculosis treatment and prevention, the National Tuberculosis Control Program is using a multi-sectoral approach that has shown to be a key factor in the success of the program. The National Tuberculosis Control Program has established an advocacy, communication and social mobilization (ACSM) unit with a strategy aimed at engaging all sectors and stakeholders, an approach that has been validated by many achievements.
Today, educational programs to raise tuberculosis awareness are being broadcast on national and private TV and radio channels. Both print and electronic media are being used efficiently to teach the public about tuberculosis and eradicate the age-old stigma associated with the disease.
Every year, World Tuberculosis Day is commemorated at national and sub-national levels. This annual event is organized in collaboration with the ministers of education, culture and information, and public health. During World TB Day 2009, the National Tuberculosis Control Program and the Ministry of Public Health in collaboration with the Stop TB Partnership in Afghanistan mobilized over 1.2 million school children under the banner of Million Youth March in the Eastern Mediterranean region, raising awareness of the disease and teaching about its presence in our society.
Another important level of disease control is engaging other organizations and establishing alliances such as the Stop TB Partnership at a national and sub-national level. These coalitions are advocating for maintaining high-level political commitment, raising resources, using different means of increasing awareness about the disease and the efforts being made by the National Tuberculosis Control Program for its care and control.
However, while educating the general public and advocating for political commitment is significant, one of the most important groups the National Tuberculosis Control Program is successfully involving in its educational efforts are tuberculosis patients and survivors. Established in 2009, Afghan Tuberculosis Patients Association is expanding rapidly. This organization enables treated tuberculosis patients to be involved in various activities of care and control. The Patients’ Charter for Tuberculosis Care outlines the rights and responsibilities of people with tuberculosis and empowers patients and their communities through increasing knowledge of the disease. Initiated and developed by patients from around the world, the Charter makes the relationship with health care providers a mutually beneficial one. This association is working towards identifying tuberculosis patients through active case findings and ensuring successful completion of treatment course for diagnosed tuberculosis patients. By doing so, they are aiming to make local communities tuberculosis free.
Concerted efforts by the National Tuberculosis Control Program and the Ministry of Public Health are supported by our collaboration with other ministries and departments to raise awareness and improve tuberculosis treatment in Afghanistan. Ministries of prisons, education, and justice as well as the Afghan parliament are now active partners of our program.
To truly make our approach multi-sectoral and involve all stakeholders, the program is also working closely with United Nations agencies and international organizations. The World Health Organization is a strong technical and implementing partner. The World Food Program is providing food support to all diagnosed and registered tuberculosis patients. International donors including the Global Fund, Canadian International Development Agency, Japan International Cooperation Agency, United States Agency for International Development, MSH, and the Italian Cooperation are major partners of the program. Many other local and international NGOs like BPHS/EHPS implementers; BRAC, IESPO, Afghan Anti TB Association (AFGATA) and Afghan Tuberculosis and Lung Disease Association (ATLDS) are working together on various areas of the program starting from implementation to advocacy.
We believe that such cooperation is key in developing education programs and fighting tuberculosis. To lift the veil covering this disease, we must combine forces and teach the public about the symptoms of tuberculosis, early diagnosis, treatment and the possibility to defeat the disease and live a healthy and productive life. Tuberculosis is killing more and more people, despite being completely curable. Through education, we can increase the number of diagnosed and cured cases in Afghanistan and eventually stop the disease. GHD
The Open Health Initiative to Improve Reproductive, Maternal, Child, and Newborn Health in the East African Community Partner States
When leaders of country governments sign political commitments such as the Millennium Develop-ment Goals (MDGs), they are not only making commitments to the global community but more importantly to the people whose lives depend on the country’s
ability to meet these targets to improve health. With stunting rates for children under five at 58 percent in Burundi, maternal mortality rate at 488 per 100,000 live births in Kenya, child mortality rate at 76 per 1,000 live births in Rwanda, 27 percent unmet need for contraceptives in Tanzania, and skilled attendants at only 59 percent of births in Uganda, the countries that comprise the East African Community (EAC) have an opportunity and are committed to improve RMNCH through leveraging the collective market size, knowledge, and continual successes in the region in order to meet and continue to improve beyond the targets identified in recent political commitments. I applaud the leadership of the UN Secretary General as well as the commitment of East Africa’s leaders to focus on Reproductive, maternal and Child Health. They deserve all our support.
Recognizing the great breadth and depth of knowledge within the EAC, the Open Health Initiative to Improve Reproductive, Maternal, Child, and Newborn Health in the East African Community Partner States (OHI) aims to support the partner states reach their goals for women’s and children’s health by focusing on three thematic areas: ‘Accountability for Results and Resources’, ‘Results-based Financing’, and ‘Innovation’.
Only through quality data, including vital registration, can the EAC as a region measure, target, and scale-up successful interventions. Within the current financial context, improving women’s and children’s health in the EAC Partner States will primarily rely on using existing funds — domestic and external — more efficiently and effectively. The OHI is therefore prioritizing increased accountability and transparency for results and resources by all stakeholders as essential to improving women’s and children’s health and reaching country’s targets for MDGs 4 and 5.
Furthermore, the initiative, as a long-term and catalytic intervention, will initially focus on three cross-cutting strategies to make an immediate impact within the partner states across the three thematic areas and against MDGs 4 and 5: ‘Strengthen and Maintain Political Momentum’, ‘Best Practices and Knowledge Sharing for Action’, and the ‘Acceleration Fund for RMNCH’.
In a clear and decisive step in prioritizing the health of women and children, the OHI was approved by all five heads of state in the EAC in November 2012 with implementation set to begin in January 2013.
How will greater accountability save lives?
Accountability encompasses political accountability to previous commitments, performance accountability to meet targets, economic accountability for reporting financial information. Most importantly accountability is necessary to provide quality care for patients. It is not just standards and commitments that will improve accountability, and therefore health for women and children, but actions taken within countries to ensure that data are properly recorded and reported and that financial information is tracked and shared. Given current global financial constraints, we must do more with what resources and knowledge we have by increasing accountability and efficiency of resources and decreasing duplication of efforts.
In signing the OHI into regional policy, for example, the partner states agreed to track all health budget and expenditure data and publish a routine report of actual allocation for women’s and children’s health. This action will require not only greater effort from national governments, but full cooperation and openness from global donors and stakeholders. Furthermore, the Open Health Initiative will support the facilitation of an agreement on a set of key maternal and child health indicators already collected through the national health systems that will be reported annually to heads of state within the EAC. Monitoring and reporting the progress of targets for improving outcomes of women’s and children’s health to high levels of governments will help keep policy makers and government officials accountable against stated commitments and to their constituencies.
Tracking resources and comparing allocations with health outcomes will inform decision-makers on whether more resources are needed in procuring commodities such as family planning, training skilled birth attendants, or conducting immunization campaigns. Moreover, tracking resources and results will let us know which regions of a country are struggling most and can help improve equity of care and access and identify best practices that can be leveraged regionally.
And, the capacity to learn from each other exists in East Africa. In Rwanda for example, the national health resource tracking system provides a detailed overview by health area of money being budgeted and spent and is linked with key objectives of the health sector strategic plan, ensuring that money is allocated based on previously made commitments and goals. Since all development partners and donors are engaged along with government, the system is more transparent and coordinated, resulting in more informed decision-making and a more efficient use of limited resources and hence potentially better health outcomes for patients. It is possible to track all budgets and expenditures against an agreed health strategic plan. Through the Open Health Initiative, I look forward to partner states have implementing systems that increase accountability for both results and resources.
At the global level, given the economic and financial challenges we face, and the struggle by all countries to meet the MDGs, there is an acute need to ensure a maximum impact and effective use of funds towards clear outcomes. Resources available to countries must be predictable and long term. They must also be protected from the vagaries of global politics. The lives of women and children are too important to be allowed to fall through political cracks.
Despite the adoption of policies and commitments to improve women’s and children’s health, there are resource shortages and funding gaps to supporting successful interventions. As a key strategy in the implementation of the OHI, the Acceleration Fund for RMNCH will help address some of the funding shortages while being complementary of other funding mechanisms. The Acceleration Fund for RMNCH will make flexible resources accessible in real time to Partner States that can be used for scaling‐up high impact interventions towards the improvement of women’s and children’s health and as an incentive to the Partner States to improve on accountability commitments made through initiatives like the UN Commission on Accountability and Every Women, Every Child by linking subsequent disbursements of funds to improvement of selected indicators. This catalytic, innovative, and results oriented fund will provide fast and flexible resources to countries to improve women’s and children’s health while strengthening accountability measures.
Time to change business as usual
Right now, across all five of our partner states, there is an unacceptably high rate of maternal and child mortality which hinders the development and advancement of individuals, families, and nations. No woman should die or suffer debilitating results from childbirth and every newborn should have a healthy childhood. We owe this to our people, and by uniting as one EAC and as a larger global community, we have the knowledge and capability to improve the welfare of women, children, and families and take significant steps towards decreasing maternal and child mortality. There is a long road ahead to build these systems and put quality information in front of decision makers, however improvement is not only possible, it is essential for the posterity of our nations.
By empowering our assiduous leaders in countries, along with partners in development both domestic and foreign, with information on where resources are most needed and which interventions are yielding the greatest impact, progress can be made towards meeting previously made political commitments and improving the lives and health of women and children. Additionally, the Acceleration Fund will be the first regional incentive funding mechanism based on ‘results’ no ‘inputs’ changing the way financing is disbursed. GHD
The East African Community (EAC) is the regional intergovernmental organization of the Republics of Burundi, Kenya, Rwanda, the United Republic of Tanzania, and the Republic of Uganda, with its headquarters in Arusha, Tanzania. The Vision of EAC is a prosperous, competitive, secure, stable and politically united East Africa; and the Mission is to widen and deepen Economic, Political, Social and Culture integration in order to improve the quality of life of the people of East Africa through increased competitiveness, value added production, trade and investments.