An Open Letter to the Healthcare Industry in New York

Dear New York State of Health, Medtronic, Eli Lilly, NovoNordisk, United Healthcare, Healthfirst, Metroplus, and Empire Blue Cross Blue Shield;

I am writing because of my concern that policies and procedures for acquiring and affording your medication is causing a liability for your company.

It is costing you business and endangering the lives and well-being of your patients and customers.

I have been type 1 diabetic for 20 years. I was diagnosed at the age of seven, just before New Years Eve in 1999, in St Christopher’s Hospital in Philadelphia. Just a few years later I became one of the first children in the Wilmington, DE area to wear an Animas insulin pump, part of a clinical study that ultimately proved that insulin pump therapy was not only safe for children, but gave them access to better control of their blood sugar and a better lifestyle overall.

Thanks to the insulin pump, I’ve been able to do and accomplish things that the seven year old boy could never dream of. From playing varsity sports in high school, to starting and growing my own business in New York City where I now live and work as a freelance tour guide, actor, writer, and marketing consultant.

When I turned 26 I lost insurance coverage that I had through my mother. While I was on that insurance, a Blue Cross Blue Shield plan, ordering pump supplies, insulin etc. was a seamless process and everything seemed reasonably priced. I admit at the time I was not aware of the actual cost of the supplies, nor the burden it places on insurance companies.

When I lost that insurance I was referred to the New York State of Health Marketplace. I purchased a plan with United Healthcare and immediately had difficulties obtaining supplies. The first issue was with Humalog insulin. Despite being down to my last vial, the representative I spoke to insisted that there was nothing they could do to cover my prescription without prior authorization.

“If you just have to go to the hospital then that’s what you have to do,” said the representative.

I wrote to UnitedHealthcare explaining that if I went to the hospital, it would cost more money to cover that expense than if they made an exception to policy to cover the insulin so I could get it in a timely fashion. Thanks to a representative named Heather, they promptly did so.

Several months later I lost coverage through United Healthcare and I’m not entirely sure why or how. Representatives at United Healthcare referred me to New York State of Health, and New York State of Health referred me to United Healthcare. I then switched plans to Healthfirst, because I had seen their advertisements on the subway and spoken to sales representatives who promised that they would cover insulin without any prior authorization hoops to jump through… as long as I buy Novolog insulin made by Novonordisk, which I can take exactly as I take Humalog made by Eli Lilly.

Come time to order the insulin, again down to the last vial, and Healthfirst can’t tell me if the supply will count towards my deductible. They refer me to Capsule Pharmacy and then Capsule Pharmacy refers me to Healthfirst. Eventually I have no choice but to buy as much insulin as I have savings for.

Two vials of Novolog insulin from Capsule Pharmacy for $556.18, or $278.09 per vial. My full prescription would have cost more than $1,100. Depending on how much insulin you use, one vial can last anywhere from 3–4 weeks, and insulin expires within 28 days after opening.

Infuriated with my experience, I switched plans to MetroPlus, again after confirming with representatives in person at the office at 2221 Church Avenue, Brooklyn, NY 11226 that they would cover both insulin and supplies without jumping through any hoops.

The Novolog insulin was covered as promised, but when it came time to order Medtronic Insulin Pump supplies I ran into more problems.

Five different Metroplus representatives referred me to a list of vendors in their network. None of the representatives could confirm which vendors carried the supplies that I needed, and some of the vendors were breast pump suppliers, not insulin pump suppliers.

A Medtronic representative told me I could always order the supplies directly from medtronic. However, this was not the case. Because I need a prescription for the supplies, and Medtronic doesn’t work with my insurance.

I spoke with Medtronic representative Jessica, who helped me narrow the list down to two. One pharmacy said they don’t have insulin pump supplies. The other, Charles Pharmacy, said they only serve patients on medicaid, which I do not qualify for.

I spoke with my doctor who explained that the most likely scenario is that Metroplus was being so vague in referring me to these vendors knowing that nobody actually carried the supplies and that they don’t want to bother trying to cover the supplies. At this time, the open enrollment period opened. I took advantage of the opportunity to transfer to a new plan.

Once again, I spoke with Jessica, who confirmed that Empire BlueCross Blue Shield would be able to cover everything without a problem.

Come time to order the supplies, I spend roughly two hours on the phone trying to explain what these supplies are so that someone can find a vendor. I’m waiting for a call back as I write this article.

The Issue At Large

As you can see, the healthcare system in our country is a mess, and no one company is solely responsible for the situation that we all find ourselves in. However, the lack of proper care that has been taken to help patients like me navigate this system is unacceptable. It has cost me hours of my time, it has put my business and career endeavors, caused insurmountable stress, and it is also hurting your business.

It is also costing suppliers business. Without a streamlined process to acquire my supplies, not only are your patients lives in danger which creates a liability, you’re losing revenue on what we would be spending on supplies. Instead, we ration not just insulin, but supplies. We buy them from Canada, on eBay, from other suppliers, and from each other.

This needs to stop.

In Summary, My Concerns Are

• The sheer cost of Insulin and insulin pump supplies without insurance or with high-deductible plans makes them difficult for patients to properly afford. This causes patients to ration supplies and or buy from other vendors.
• The sheer cost of insulin and insulin pump supplies burdens insurance companies with costs that are then passed on to other consumers — everyone’s premiums rose not because of the ACA (Affordable Care Act) but because of the burden that insurance companies were shouldered with in that they have to cover people with preexisting conditions. The success of the ACA was that it guaranteed coverage for people with pre-existing conditions like diabetes. Its failure was it did not regulate the price of medication. You have the power to change this.
• Representatives from your companies have not been able to find avenues for patients to acquire insulin and or supplies. This includes finding ways to get the supplies covered, and also finding viable and legal ways to acquire the supplies without going through insurance.
• Prior authorizations and similar roadblocks for lifesaving drugs like insulin which are seldom abused cause more harm than good. Although it may be convenient to delay patients from acquiring that medication through your insurance so that they might require it in other ways and not burden you with the cost, you are then taking on the risk that those patients will die or suffer complications from rationing insulin, which will ultimately cost more than covering the supplies in the first place.
• As a result of the difficulty I have faced to legally and affordably acquire insulin and insulin pump supplies, I have resorted to rationing my supplies which jeopardizes my health and life. I have wasted countless hours speaking to representatives that lead me to dead-end solutions.

What New York and the New York State of Health Can Do

• Educate health insurance navigators about diabetes, diabetes supplies, and how these drugs are classified so that they can provide accurate information to patients with diabetes. I reached out to over 60 qualified navigators in December 2019 and not one of them knew how to help me pick the right plan or know what to look for, usually due to a lack of knowledge about type one diabetes.
• Increase the income threshold for medicaid to make it accessible for more people
• Pass legislation to limit the price for prescription medication like insulin
• Pass legislation that bans the practice of prior authorization and other
• Offer a single-payer healthcare system for all New York Residents

What Insurance Companies Can Do

• Provide more transparency about how to acquire and get medications covered
• Help patients understand the system instead of referring them to directories

What Suppliers and Manufacturers Can Do

• Train representatives in how to help patients find additional avenues for covering medication.
• Lower the price of insulin and insulin pump supplies
• Release patents on formulas to allow generic production of medication
• Expand free and affordable insulin initiatives

What Individuals Who Want to Help Can Do

• Support candidates who seek to pass legislation for universal healthcare or regulate the industry
• Understand and explain to conservative opposition that while capitalism may drive innovation, left unchecked can also create monopolies that stagnate innovation — and that’s why insulin prices have gone up while the product has not changed.
• Donate to charities and initiatives like Camp Possibilities that are dedicated to educating and empowering young people how to manage their diabetes and navigate this system. Without the love, support, and community I am privileged to have with that organization, I would not be able to advocate as strongly as I do. www.camppossibilities.org

What I am Doing To Advocate For Change

I’ve been working and volunteering with Camp Possibilities for more than 10 years as a counselor and translator. My goal has always been to teach kids ages 8–15 how to manage their diabetes so that they can follow their dreams like I do. I am happy to share any insights and information to parents, teens, or anyone who might benefit from information in English and Spanish.

I’ve written letters of complaint to most of these organizations and I plan to write more. I also plan to get in touch with the media and congressional representatives.

I’ve spoken to congresswoman Kim Schrier about affordable insulin, and I plan to speak to more representatives, senators, and press about this situation. I am more than happy to welcome you into these conversations so that we can work together towards finding a solution.

My aim is not to shame individuals or corporations but rather to bring everyone together together to find a solution. Before I resort to seeking legal repercussions, I plan to continue to advocate for a solution so that people who suffer from type one diabetes can afford the care that we need, and so that companies can continue to fund their efforts to provide better care and more innovative technology.

I can be reached directly to set up a time to speak at jason@jasonhewett.com

Sincerely,

Jason M. Hewett

January 22, 2020