The Patient Advocate Perspective: 72nd World Health Assembly
The World Health Assembly (WHA) is the decision-making body of the World Health Organization (WHO). It is attended by delegations from all WHO member states and focuses on a specific health agenda prepared by the executive board. The main functions of the WHA are to determine the policies of the organization, appoint the Director-General, supervise financial policies, and review and approve the proposed program budget. The WHA is held annually in Geneva, Switzerland. This year, I was honored to attend some WHA side events; these are events where delegates attending the WHA come and listen, to mostly civil society organizations (CSOs), like NCD Child, to lobby for different topics on the WHA agenda.
Universal Health Coverage (UHC) and how it can be practically implemented by member countries was a dominant area of discussion and debate. UHC is the new buzzword in global health with governments, and healthcare professionals alike, grappling with how best to practically implement it. UHC, in theory, means all individuals and communities have access to
- integrated healthcare services that are promotive , preventive, curative, rehabilitative and palliative ;
- quality healthcare services, while also ensuring that the use of these services does not expose the user or family to financial hardship.
It is important to highlight quality services and financial protection, as these aspects are usually lacking, for many, in lower and/or middle-income countries (LMICs).
Primary health care (PHC)  has been promoted as a practical means to achieve UHC. PHC is a comprehensive, whole-person approach to health and well-being focused on the “needs and circumstances of individuals, families, and communities.” Essentially caring for people (a community), rather than simply treating specific diseases or conditions; PHC can be simplified into eight essential ELEMENTS .
E – Education concerning prevailing health problems and the methods of identifying, preventing, and controlling them.
L – Local endemic disease prevention and control.
E – Expanding immunization against major infectious diseases.
M – Maternal and child health care including family planning.
E – Essential drugs and medicines.
N – Nutritional food supplements, and adequate supply of safe and basic nutrition.
T – Treatment of communicable and non-communicable disease and educating the public on mental health.
S – Safe water and sanitation.
Many of these elements require participation from the community to work. Educating the public on how to take their health into their own hands is a powerful way to improve an individual’s overall health; a significant perspective change from thinking of healthcare as going to the hospital when one is sick. This brings me to the key players, other than the community, needed to make PHC a reality. They include, but are not limited to, health professionals, academic institutions, patients, civil society, young people, local and international partners, agencies and funds, the private sector, faith-based organizations, and others. PHC needs these stakeholders working in unison to become a reality. You’ll notice, I included patients as a stakeholder in achieving PHC. Patients, especially chronically ill patients, or people living with non-communicable diseases (NCDs) must be part of the discussion, from the start. Because our conditions are long term, mostly life-long, we are enlightened about our conditions and the elements of PHC that need to be strengthened as a result. Our input is vital, and I believe that’s why I was invited to speak at the WHA last month. It was a chance to ensure the usual suspects in the room, civil society, private sector, governments, heard about lived experiences, in my case, my life with chronic kidney disease and gaps I have seen other stakeholders fail to fill.
The first side event was facilitated by Partners In Health (PIH), a non-profit organization that aims to provide a preferential option for the poor in health care. Their side event titled leaving no one behind, highlighted gaps (especially with people living with chronic illnesses) and how these conditions call for more intensive needs at the secondary care/district hospital level: i.e. long term medication management, surgery, rehabilitation and palliative care. A more holistic approach is needed, in addition to PHC, that looks at the whole health care system in order to address these shortcomings and make UHC achievable. In the panel, we had representation from different stakeholders involved, including health care workers, international partners, government representatives, and two patient advocates; a lady from Mozambique who had battled Multi-Drug Resistant Tuberculosis (MDR-TB) and I. In the session, I spoke about chronic kidney disease, and my journey looking for an affordable transplant. The main point I raised during the discussions was the meaningful engagement of patients. Patients are usually the forgotten stakeholder, with very little representation and engagement at high-level meetings.
In the second session facilitated by NCD Child, a global multi-stakeholder coalition focused on the prevention, treatment, and management of NCDs in children, adolescents, and young people; we spoke about the United Nations Convention on the Rights of the Child (CRC); an international legal framework that protects and fulfills the rights of children. The convention was signed on 20th November 1989, some 30 years ago. This side event looked at the CRC and how it relates to NCDs today. I spoke specifically on article 24.2b To ensure the provision of necessary medical assistance and health care to all children with an emphasis on the development of primary health care. I told my story and focused on how expensive immunosuppressants make a transplant inaccessible to many young kidney failure patients, forcing them to remain on dialysis; with no support from the national insurance fund in Kenya, we pay out of pocket for these essential medicines. I contrasted my story with my good friend, Martin Ndung’u, whose kidneys failed the same year as mine – only two months later. He was only 19 at the time, and to date has not been transplanted. Essential medicines give us as people living with chronic illnesses a chance to manage our conditions and attain the highest level of health possible; a basic human right in line with the Universal Declaration of Human Rights article 25.
So, what’s the take home after attending the 72nd WHA? For me it was understanding the different levels of engagement, especially for young patients, and how these levels are interconnected. In an impromptu session with Dr. Stefan Peterson, Chief of Health at UNICEF during the NCD Child event, I managed to ask him how we as the youth can engage high-level individuals and bring our concerns onto the agenda for debate. His answer, ‘Don’t wait for me to listen. Make me listen!’ An insightful answer that made me realize that health is our right, and we don’t need to beg to access quality, affordable services. It’s our time to stand up and make our leaders listen. This can be done several ways. In my opinion, starting at the community level is the best way for young patients to begin creating awareness and advocating for essential change. NCDs include a wide array of conditions that all have multiple gaps in achieving UHC. We as patients,(especially people with chronic conditions) need to first find our communities, and secondly come together collectively; this will enable us to transcend our individual conditions and push for meaningful national and eventually international engagement. Building this synergy has been a barrier for patients in finding our voice. For example, if we can’t build a narrative for multiple conditions that lack access to essential medication, then we won’t have the numbers to put pressure on a national level to ensure these medicines are available and affordable. These individualistic mentalities in NCD groups enable us to build campaigns that alert our government on gaps we experience, but they often lack the momentum to get them acted on as a priority.