After losing state-funded medical coverage because of a slight increase in income, Tina and Eric Sunden of Auburn say they are struggling financially each month to pay for lifesaving insulin for their teenage daughter, who was diagnosed with Type 1 diabetes when she was 11.
The Sundens are not alone.
The high cost of insulin, a drug needed by diabetics to stay alive, has gained national attention as 1 in 4 diabetes patients have reported rationing medication because of the cost. For some, it has led to death, including Alec Smith of Minnesota, who died in June 2017 at 26 when he was forced to ration his insulin because he could not afford it, according to his parents. Others have turned to GoFundMe pages to request help paying for insulin as the cost skyrockets, making it the most costly chronic condition in the U.S., according to the World Health Organization.
From 2012 until 2016, the cost of insulin for people with Type 1 diabetes nearly doubled, increasing from about $2,900 a year to about $5,700, according to the Health Care Cost Institute, a nonprofit research institute.
The figures, HCCI says, represent the combined amount paid by a patient and their health plan for the medicine and do not include rebates paid later.
Three companies – Eli Lilly, Sanofi and Novo Nordisk â€“ control 99 percent of the worldâ€™s insulin, and there are no generic forms of insulin on the market.
Ms. Sunden said up until the start of this year, all of the medications for her daughter, Giuliana Valera, 16, were covered by MassHealth along with her doctor’s visits and supplies. However, on Jan. 1, Ms. Sunden said MassHealth notified her she was making too much money and would have to pay for part of Giulianaâ€™s health insurance and a co-pay for her medications. Ms. Sunden, a customer service representative, said her pay increased by about $200 per month, but the additional monthly health care costs for her youngest daughter are more than that. She and Mr. Sunden, a truck driver, also have two other children and their budget was already stretched, she said.
The Sundens now pay $155 a month for Giulianaâ€™s health insurance, about $25 a month for her dental coverage and also $95 a month for her insulin with the deductible from the insurance, Ms. Sunden said.
â€śI really didnâ€™t see it coming,â€ť Ms. Sunden said. â€śI was fearful when I made the job change it would affect it.â€ť
Ms. Sunden, who has asthma, also needs an inhaler that costs about $80 a month, she said, but has gone without it to help pay for insulin.
â€śI can go without it, but she canâ€™t,â€ť she said. â€śIâ€™m having to choose between two lifesaving medications, but she comes first. You always choose your child over yourself. My biggest concern is that the cost of insulin will increase more. I donâ€™t know what to do. If it goes any higher, my husband said he will have to get a part-time job to pay for it.â€ť
She said it scares her to hear about kids with diabetes who have died trying to ration their insulin whose families canâ€™t afford it.
Giuliana needs three bottles of insulin a month â€“ two at home and one at school, Ms. Sunden said. Without insurance, those three bottles would cost the Sundens $970, she said.
â€śIâ€™ve been thinking about having her eat more salads so she doesnâ€™t need as much insulin because Iâ€™m always worried about how much she is using so we donâ€™t run out,â€ť she said. â€śI do not understand how people with Type 1 (diabetes) are not fully covered because they cannot live without insulin. Without it, they die. It’s a disability in my view. There are no substitutes or anything else. No insulin – no life. Unless you have a child with it, you donâ€™t know the daily fear we live in.â€ť
Frustrated, she said she plans to contact local legislators and anyone else who will listen.
â€śDiabetics need insulin to live. Why would these companies raise the price of insulin and why are we having to pay such a high price to keep our children alive?â€ť Ms. Sunden said. â€śThey didn’t choose to be diabetic. Diabetes chose them and all we can do as parents is fight it back. Right now we’ve created a health savings account to cover some of the costs, but what about families that can’t do that? What do they do?â€ť
Laura T. Ricci of Sterling, an advocate whose son, Domenic D. Ricci, 20, was diagnosed with Type 1 diabetes 12 years ago, runs a Facebook group for parents who have children with diabetes. Ms. Ricci said she is contacted on a regular basis by people from all over the U.S. forced to ration their insulin.
â€śThe insulin market is in shambles, creating immorally high prices,â€ť Ms. Ricci said. â€śOnly three companies make up 96 percent of the insulin market volume in the United States and they have made an art out of tweaking and manipulating insulin formulas in order to extend their patents and eliminate any possibility of generics from entering the market.â€ť
Despite these brand-name insulins being around for decades, the average price for a vial of short-acting insulin increased 585 percent within 14 years, she said, and the price for long-acting insulin rose from $170 to over $1,400 for just one 20 milliliter vial.
Ms. Ricci said legislation is needed to create emergency access to insulin for people who are low on insulin and also to prohibit insurance companies from changing coverage on insulin types or brands and insulin devices in a contract year.
She said she also supports requiring insulin manufacturers and pharmacy benefit managers to disclose the prices that they sell insulin and how much the rebates and discounts are for the benefit managers.
â€śI have MassHealth, so I never had a problem,â€ť she said. â€śIn Massachusetts, a lot of people are eligible for MassHealth, but there are people who live in Massachusetts who arenâ€™t covered by MassHealth because they make too much money and have private insurance through their employer but still canâ€™t afford to use their insurance because their deductible is so high.â€ť
To get around the system, she said, people are going to other countries to get their insulin, including Canada, where they can get the same bottle of insulin as in the U.S. for $35 instead of paying $325 for it here.
â€śA woman who lives in Newton who is part of my diabetes group buys her insulin from Canada because she canâ€™t afford to use her insurance with the high deductibles,â€ť Ms. Ricci said. â€śPeople are having to make a choice between paying for rent, buying food or insulin.â€ť
Part of the problem is the supply chain, she said.
â€śIt costs $3 to $6 to make a bottle of insulin,â€ť she explained. â€śFrom the manufacturing warehouse to the distributor to the pharmacy benefit managers and insurance companies, they all take a chunk, driving the price up for the end user – the patient who ends up paying. Insulin companies make deals with insurance companies.â€ť
Ms. Ricci has contacted legislators at the state and federal level pushing for oversight of price increases.
â€śWe want insulin available like a loaf of bread or gallon of gas without a prescription,â€ť she added. â€śRight now, insulin is the fifth most expensive liquid in the world at $113,000 a gallon.â€ť
Todd A. Brown, executive director of the Massachusetts Independent Pharmacists Association in Stoughton, which represents 160 independent pharmacists in Massachusetts, said there is no reason that the price of insulin should have gone up.
Some of the cost increase is because most people use an insulin pen to inject it as opposed to a vial and syringe, he said, and also because there are newer versions of insulin.
â€śBut they are not so much better than the older versions,â€ť Mr. Brown said. â€śThat doesnâ€™t explain the dramatic cost increase. The real reason is that nothing prevents drug companies from increasing prices. Insulin is not the only drug this has happened with. Part of it is greed, but if you ask the drug companies they will give you a bunch of answers, including the costs of developing drugs can be in the hundreds of millions of dollars.â€ť
Drug companies have to come up with money to develop a drug, he said, and for each drug that makes it to the market, 99 other drugs donâ€™t, and not all companies receive federal funding for drug development.
Also, some of the drug companies have pharmacy benefit managers – middlemen between the insurance company and pharmacy who dictate the price, he said.
â€śThey set the cost the patient pays for medications,â€ť Mr. Brown said. â€śThe insurance company will tell you they perform a valuable function, but lots of people, including me, donâ€™t agree. They take a percentage for themselves through rebates that they are supposed to pass onto the insured.â€ť
President Trump proposed last week, he said, to make rebates illegal unless they passed directly onto patients.
â€śBut drug pricing is a bigger issue than just one thing,â€ť he said. â€śInsulin is a good example of why we need to do something.â€ť
In other countries, the government sets the price for the drug, he explained, rather than depend on competition to keep the price down like in the U.S.
â€śCompetition is not working so well,â€ť he said. â€śIn other countries, they set an amount for the drug and tell the company to take it or leave it. If they donâ€™t, they will just steal your patent, make it and sell it themselves.â€ť
One option some legislators are considering is tying the cost of drugs in the U.S. to the cost paid in other highly developed countries, he said.
â€śWe canâ€™t continue down this road with people who canâ€™t afford medications and are rationing insulin,â€ť he said. â€śIt definitely needs to be addressed, but it is a complicated issue with a lot of moving parts. We donâ€™t have a government-run health care system like other countries with one entity that buys the drugs and has the power to set the price. Thatâ€™s part of the answer.â€ť
Mr. Brown said drug pricing will likely remain at the forefront of discussions for the next six months to a year at the federal level â€“ something that is long overdue. But that doesnâ€™t help people struggling with the high cost of insulin right now, he said. For those people, until there is a resolution, he said he recommends talking to their pharmacist and doctor about possible options for insulin that has a lower co-pay. Older insulins typically cost less, he said.
â€śIt depends on the health insurance â€“ one insulin may be more expensive depending on the plan,â€ť he said. â€śThere is not a lot of good data to show new insulins are significantly better. Adults may be able get away with a lower-priced insulin.â€ť
People can also contact the drug manufacturer, he said, about patient assistance programs. Information about the program is usually available on the companyâ€™s website or people can contact them directly, he said.
â€śThey all have them, but they are different from company to company,â€ť he said.
People can also talk to their pharmacists about tools that can help them take their medications appropriately, he said.
In a letter to pharmaceutical companies earlier this month signed by U.S. Sen. Elizabeth Warren, D-Mass., and other Democrats serving on the Health, Education, Labor and Pensions Committee, they demand an explanation for skyrocketing insulin prices. The House Energy and Commerce Committee also requested an explanation.
â€śAccording to the World Health Organization, insulin is an essential medicine, meaning that access to this drug at a price that individuals and communities can afford is a basic requirement of a functioning health care system,â€ť the letter states. â€śUnfortunately, rapidly increasing insulin prices mean that for many patients, access to this essential medicine is threatened.
â€śOne in four diabetic patients report rationing the medication because of the cost, with potentially devastating consequences. It is clear these steep price increases are resulting in patients lacking access to the lifesaving medications they need,â€ť it says.
U.S. Rep. James P. McGovern, D-Worcester, said he has met with families who have kids with diabetes who have complained about the increasing cost of insulin.
â€śIt is a real financial burden,â€ť he said.
People dying from rationing insulin because they cannot afford it â€śshould not happen in this country,” he said.
â€śWeâ€™re laying the groundwork to deal with the rising costs of insulin and drugs overall,â€ť he said. â€śPeople are getting gouged.â€ť
Better oversight and enforcement of drug companies is needed, he said.
â€śWe need to investigate these companies engaging in unconscionable increases,â€ť Mr. McGovern said. â€śIn my view they are getting away with this with no oversight.â€ť
Legislation demanding full transparency of excessive price increases is needed, he said.
The American Medical Association has called for the federal government to protect patients from companies that are price gouging on insulin products.