#Insulin4All: My Journey to the U.N.

The following is my personal account of my participation in the interactive hearing on the preparatory process toward the third High-Level Meeting of the U.N. General Assembly on non-communicable diseases

On July 5th, in New York City, I had the distinct honor of attending an interactive hearing as part of the preparatory process toward the third High-Level Meeting of the United Nations General Assembly on Non-communicable Diseases (NCDs). My trip to New York was made possible by Patients for Affordable Drugs (P4AD), a Washington, D.C.-based NGO founded by cancer patient David Mitchell. I have been a part of P4AD since its inception, having met David through my brother. My family has been particularly affected by the issue of the rising cost of prescription drugs, as I have a daughter who was diagnosed with type 1 diabetes at age 3 and a wife who is a breast cancer survivor.

According to the P4AD press release detailing our participation in the hearing, “The General Assembly and the World Health Organization lists the issue of controlling and managing NCDs a priority at its 72nd Session. The July 5 hearing is part of the preparatory process for the high-level meeting Sept. 27th.” Featuring a wide array of patients, industry representatives, advocacy organizations, elected officials, government ministers, NGOs, and other interested parties, the one day hearing was held at the U.N. headquarters and featured 4 separate panels that focused on: 1. Scaling up action for the prevention and control of NDCs, 2. Financing for the prevention and control of NCDs, 3. Promotion of multisectoral partnerships for the prevention and control of NCDs, and 4. Political leadership and accountability.

Though I consider myself a small-time advocate and am active on social media and other platforms in which I am able to share my family’s story as it relates to prescription drug pricing, this is the first time I’ve attended such a large meeting. Most of my experience in the advocacy space has involved bringing awareness to the issue of drug prices by detailing how much our family has to pay for our daughter’s care and how much it cost to treat my wife’s cancer. In addition to sharing our story, I have had the opportunity to meet with recently with a state legislator in Oklahoma, and have made it a goal and priority to work at the state level to continue to both raise awareness and call for concrete action on this growing crisis.

While I applaud the UN’s efforts to tackle the serious issue of NCDs, part of me wonders if the scope of the meeting was too broad to make achievable results possible. There are disparate voices and varied opinions and interests within the type 1 and type 2 diabetes communities alone, so expanding the discussion to cardiovascular disease and cancer makes one wonder if the UN might be better served narrowing the scope of the NCD discussion to specific diseases and causes. The broad aspect of the meeting created an atmosphere in which a thoughtful exchange of ideas was difficult, and the “discussion” portions of the panels seemed only to consist of attendee groups reading two minute statements related to the particular interest they represent.

The hearing was eye-opening in many ways. I was disappointed to hear many of the speakers focus almost exclusively on prevention, particularly with regard to diseases like type 2 diabetes and cancer. Speakers and panelists often placed heavy emphasis on factors such as obesity and tobacco and alcohol use. This is always a sensitive area for me, as neither my daughter nor my wife and I did anything to cause her type 1 diabetes. Similarly, my wife’s cancer diagnosis came as a shock because she was 39 and in excellent health, free from a history of vices like smoking. I grow weary of discussions on prevention, because they often lead to dismissive attitudes toward patients and even demonization of those affected by diseases like diabetes and cancer. We are quick to blame the patient without compassion for the struggles they face, regardless of what caused their diseases and regardless of the fact that diagnosis with a NCD is often multifactorial and complicated.

With such a heavy reliance on discussions of prevention, the elephant in the room was clearly the issue of skyrocketing prescription drug prices. A few panelists and commenters either alluded to or directly addressed drug pricing, but little serious discussion seemed to take place regarding the issue of prescription drug prices being placed in the draft statement to be finalized for the General Assembly. This was baffling to me. I cannot fathom how anyone in their right mind can claim to want to tackle the issue of NCDs without addressing drug prices. They are inextricably related, if not completely entwined.

It is quite clear. The prices are too high. The profits are too large. The system is too complicated. There are too many special interest groups who have bought the access to their elected officials that ordinary citizens should have instead. One thing was excruciatingly clear to me in this meeting: the pharmaceutical lobby, as well as the tobacco, food, and alcohol lobbies, are far more powerful than even I understood. Their ability to not only influence, but in many ways dictate, public policy worldwide, plays a key role in this crisis. In the U.S., we see this play out time and time again as we watch the circular firing squad of pharmaceutical companies, insurance companies, pharmacy benefit managers, and others blame one another and throw up their hands and say there’s little they can do, while prices and profits continue to rise and business continues as usual. In the UN, I saw this illustrated today by the complete and total absence of any mention of prescription drug pricing as an impediment to fighting NCDs in their statement for the High-Level Meeting.

Meanwhile, people are dying. They are dying in impoverished and war-torn parts of the world because there is no insulin available, and they are dying in the U.S. because though there is plenty of insulin, people can’t afford it. Even in situations where insulin is available, patients are often rationing due to their inability to pay for an adequate supply. Mr. James Chau, the WHO Goodwill Ambassador for SDGs and Health, passionately asked, “Why is insulin — discovered 95 years ago — still not accessible, nor affordable for poor people in poor countries?” I agree with his question completely, but if we are serious, the discussion must also ask why so many working, middle-class patients and families in the U.S. and other countries struggle to pay for their insulin and other prescription drugs. Diabetes is deadly, whether we are talking about type 1 or type 2. It is frightening. It is all-consuming and maddening. Caring for a child or loved one or oneself with diabetes is exhausting. Adding the burden of fear that comes with wondering how and if one can afford insulin crosses the line into cruelty. Denying treatment to those who can’t afford it is such a short-sighted approach, never mind the breathtaking lack of humanity it must take to justify denying life-sustaining medicine to a person for the simple reason that one doesn’t have enough money. It is short-sighted because it leads to increased costs driven by negative outcomes like kidney failure or blindness that can often be prevented by proper access to medicine and health care. Even taking the lack of humanity off the table, this approach is fiscally short-sighted and irresponsible. The cost of treating diabetic ketoacidosis and long-term complications of diabetes far outweighs the cost of insulin.

I didn’t have the opportunity to speak today. P4AD was never called on, though we attempted to add our voice to the panel discussions. Nonetheless, I’m proud to have been a part of this hearing. I’m proud to have been in the room. I’m proud to have had the chance to listen and observe and learn. Whatever small reach I had on social media will be amplified by the committed advocates and activists whom I love and admire, and the effort will continue. I am not a policy maker. I don’t have political connections. I’m not an expert in health care. I’m just a husband and a father. But I will return home more dedicated than ever to continuing this fight and using whatever voice I am privileged to have to continue to spread awareness and seek solutions with serious and committed patients and advocates.

I am not naïve. I know what we’re up against. I know what kind of money and power we are confronting. But I also know that I heard some brave and articulate voices like Ophira Ginsburg, Manon Ress, Agnes Binagwaho, and others break through today, and I know they will not be silent. I know that groups like P4AD, which works so hard to give patients and families a voice and a forum and a seat at the table, and T1International, which provided an articulate and brilliant statement to the hearing and does amazing work, will continue their brave and important efforts. And I know that as long as I walk this earth I will fight for my daughter and my wife and all the patients whose lives are affected and jeopardized by high prescription drugs in whatever ways I can.

Thanks again to P4AD and all those working tirelessly on our behalf. Keep the faith. #Insulin4All