Cancer. Diabetes. Heart Disease. Alzheimer’s. Many people read about these chronic health conditions and imagine people in wealthy countries like the US and UK trying to manage them. The truth is that these diseases have gone global, disproportionately affecting underserved populations no matter where they live. As this month’s issue of Health Affairs highlights, noncommunicable diseases (NCDs) and their risk factors account for a majority of our global health burden, affecting rich and poor countries alike.
These global figures come to life in the delivery of local health care. In communities around the world, health systems struggle to accommodate rising demands and costs associated with diagnosing and treating these conditions. People affected by NCDs—patients, their families, and communities—bear the brunt of the cost of care, through unaffordable out-of-pocket expenses. In the same vein, NCDs contribute to our national and global economic burden, straining government resources and accruing losses in productivity. Even beyond the cost of care, people can be affected by NCDs (either directly or indirectly) during their most productive years of life.
A mother with cervical cancer in her 30s, a head of household with heart disease in his or her 40s, or an uncle with Alzheimer’s in his 50s will all be managing their conditions while also striving to contribute to their family or society. The impact doesn’t stop there; it cascades to family members and others who step in to offer support and care. As global health advocates and practitioners, we are deeply concerned about NCDs’ aggregated impact on the patient and his or her family. The current architecture framing global health built over decades is not equipped to manage the pressures looming ahead due to NCDs. In order to build the next global health response, one that includes NCDs, a key player now needs to take center stage: the patient.
More Than An Illness
We often forget the people behind these diseases, instead focusing on epidemiological and economic data, research and innovation, or the latest medicines and technologies. A United Nations (UN) Declaration on NCDs adopted in 2011 called for the engagement and empowerment of people living with NCDs. It recognized the importance of consulting patients, caregivers, and families as primary stakeholders and provided an opportunity for our advocacy community to mobilize accordingly.
In a recent Health Affairs Blog post, Dr. Karen Feinstein, president and CEO of the Jewish Healthcare Foundation, noted that effective social movements are driven by those people who feel a disease’s direct impact. We have seen this approach work in global health before. The AIDS community was extremely effective in organizing voices to be heard by people in power. What resulted was a clear movement led by those affected; organized to influence policy and resource negotiations; and intended to push decision-makers to address inequalities and stigma, unlock resources, and improve access that ultimately led to a focused global health response to HIV/AIDS.
To build a similar movement today, we need to bring to life the spirit of patient empowerment embodied in the UN Declaration on NCDs. This means recognizing that, while prevention, treatment, and care services are essential, there is much more to the patient journey which includes their challenges, and their inspiring ability to empower others. People living with NCDs face the pressure of managing their condition at home, work, school, and in the community. With limited resources to address NCDs in low- and middle-income countries, people facing these diagnoses often are left feeling that they have been given a death sentence, with limited options for care. They face the day-to-day management of their condition, in addition to coping with the financial impact of accessing health care.
While the barriers to care may vary by condition, they also face hurdles of myths and stigma, both in the community and in the health care system. For example, women with breast or cervical cancer have been deemed unsuitable for marriage. Diabetics face stigma due to dietary restrictions, chronic insulin management, or disability due to amputation. And the list goes on. Although many of us are more accustomed to hearing about the statistics or burden of these conditions, we have to recognize and elevate the countless examples of individuals affected by NCDs. They have shown that while the numbers may feel like a burden, their lives are not.
The Missing Link
Many have overcome challenges and are empowered to provide context to their journey, offer support to those in need, and mobilize to galvanize a movement never formed before. Yet, global policy dialogues have done little to highlight the stories of those affected, not only of the pressures they face but also the success they’ve achieved. We rarely hear their voice on our panels, their presence in our steering committees, or their perspective in our program design and evaluation. Such an effort wouldn’t be without challenges. People associate with NCDs differently than they do with individual conditions such as cancer or disability. How we translate the opportunity within such a broad agenda will be important.
More than champions, we need a bold patient community to tell the powerful stories of those at risk for or living with NCDs and the solutions at-hand. While UN events invite speakers from the advocacy community to address member states, what is missing is a presence en masse of the very individuals these advocates represent. As a result, global leaders have not felt the urgency of the problems faced by NCD patients or survivors. Only by seeing and hearing the true faces and voices of NCDs, will decision-makers recognize that there are people behind the policies they draft and commitments they make. In the end, most of us are or will be impacted by an NCD. Therefore, we have a vested interest in ensuring the voices of those impacted are squarely guiding the global response.
Revitalizing The Movement
Global health leaders are making strides to address NCDs, as evidenced by strategic plans, evaluation metrics, and technical guidance developed by the World Health Organization. The private sector, including corporations, nonprofits, and civil society, are working alongside governments to address barriers to access. However, more needs to be done to sustain these positive steps and reach our aggressive goals.
- Our response needs to be powered by a greater sense of urgency and awareness, and framed by people affected and their needs.
- Our results need to reflect multi-sectoral action that is inclusive and comprehensive.
- Our advocacy needs to be fueled by the voices of people affected by these conditions, ensuring their perspective is at the center of our work.
So where do we turn as an NCD community? Collective action across community organizations, businesses, the public sector, academia, and people affected by NCDs will be critical to fulfilling our objectives. In the absence of a distinct, vibrant, and organized movement linking various chronic diseases, groups like NCD Alliance—comprising over 2,000 national, regional, and global coalitions from around the world—could lead the charge in developing a global advocacy campaign that stresses holistic health across diseases and development priorities. Organizations that bring these sectors together, proactively keeping seats at the table for the voice of those affected to guide decisions, will be the torchbearers for our movement.
The time is ripe for a groundswell of voices calling for change. This month, the UN is set to adopt a new set of global development goals, acknowledging the global NCD crisis among a number of priorities. This marks the first time NCDs are recognized at this level alongside other development priorities. The attention is well-deserved and long overdue but it comes with great responsibility. It urges us to go beyond stating the burdens of these conditions to demonstrating success by meaningfully engaging people affected as our central priority. The movement begins with each of us offering patients, survivors, and others affected by NCDs a seat at the table in deciding how the world responds to their needs. They should be heard and we should listen.
Authors’ note
In addition to their formal positions and board roles, Loyce and Paurvi represent organizations that are founding funders of the NCD Alliance. They both continue to advise the NCD Alliance.
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