About Jasmeen Pooni

Posts by Jasmeen Pooni:

From California to D.C.

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“If someone is to get cancer, this is the best one with the best prognosis,” my brother’s oncologist told him as the doctor finally confirmed that my brother had between Stage 3 and Stage 4 Hodgkin’s Lymphoma. After that moment this year, I couldn’t fathom what his life was going to be like.

Only 8,500 people in the United States are diagnosed annually with Hodgkin’s Lymphoma, making it a rare cancer, and my brother was one of them. I was infuriated that something like this could happen to a 17-year-old, but the repercussions of his treatment were even more enraging. The regimen my brother received required him to stay in the hospital each time he received treatment, which added expenses to his already rigorous regimen. Thankfully, my brother was covered under my parents’ insurance – but both hospital stays and treatment are still very expensive for my family. We’re among the lucky, though; there were 28 million people uninsured in the United States in 2016, and some estimate that one in four people in the U.S. will die of cancer. Putting that into perspective made me realize how fortunate my brother was to receive treatment and continue with his life by being in full remission.

Months prior to my brother’s diagnosis, I visited Peru for a mobile clinic as a Medlife volunteer. Collectively we helped set up clinics to provide medicines and health education, and assist local doctors. People we attended to at these clinics lacked adequate water, sanitation and basic necessities to prevent diseases. These barriers contributed to their poor health, and even those who appeared healthy had underlying conditions that only local doctors could diagnose. However, I was shocked that medicines were unaffordable and inaccessible.

These two experiences in particular made me think deeper about health policy in the United States and around the world.

In early 2018, as my brother was undergoing chemotherapy and radiation, I made a decision to apply to the UC Davis Washington Program. Through the program I found Public Citizen’s Access to Medicines program.

My time with Public Citizen has been one of the most galvanizing experiences of my life thus far. Over the course of two months, I’ve learned a lot about drug pricing and the entanglement of it with intellectual property law. Although I had little prior knowledge of any of this, I was quickly immersed in everything relating to lowering drug prices.

I worked on projects including creating a table of state legislative efforts to curb price gouging as well as drafting a document on drug pricing stances of the new Democrats in Congress. Through these projects, I gradually learned the complexity of the health care system.

I have been fortunate enough to work alongside passionate people who are willing to teach me. This experience gives me hope that change is coming, and that although there are many health care disparities, people are working to make a difference. Going forward after this internship, I know fighting to lower drug prices is a movement I will continue to engage in. I hope that one day no one has to worry, as my family has, about the cost of cancer and basic necessities, all of which should be basic human rights.

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Insulin4All

Insulin is a lifesaving medicine used predominantly by patients with Type 1 diabetes and a small subset of patients with Type 2 diabetes. The treatment has been around since 1921, yet it is still inaccessible to many due to its price. Although Type 2 diabetes can be prevented, Type 1 diabetes cannot. Type 1 diabetes generally takes root during childhood and is a result of the immune system destroying the body’s beta cells, which secrete the hormone insulin. Without insulin-producing beta cells, a person with Type 1 diabetes must inject insulin to live.

Type 1 diabetes cannot be controlled without insulin, leaving people with type 1 no choice but to take the medicine. The most common insulin drugs are Lantus, Humalog and Novolog, manufactured by Sanofi, Eli Lilly and Novo Nordisk, respectfully. To purchase insulin from one of these manufacturers the average monthly out of pocket cost is $360. The high price forces patients to ration their insulin on a day to day basis, which can be fatal, or make tradeoffs with other necessities such as food.  Meanwhile, executives at the insulin manufacturing corporations live life luxuriously. The CEOs of these big companies do not have to worry about having enough medicine to last the next week or even day. In 2015 the average compensation for a pharmaceutical CEO was $18 million USD.

If the market for insulin had biosimilar competition the cost of insulin could dramatically drop. The price of biosimilars for insulin could be less than $72 per vial. However, Eli Lilly, Novo Nordisk and Sanofi account for 96% of the insulin that is in the market globally, showcasing their dominance. These three corporations are alleged to have conspired to raise insulin prices across the market.

In Washington, big money can lead to big influence. In 2017 the pharmaceutical industry spent close to $171 million in lobbying. Nordisk spent approximately $3 million dollars to lobby Congress that year, and ran a political action committee (PAC) that distributed money to both Democrats and Republicans. Hundreds of patient advocacy groups take funding from pharmaceutical corporations as well, and often side with them on policy. According to Kaiser Health News, Eli Lilly allocated nearly $15 million dollars to 70 patient groups in 2015.[1] Through these lobbying efforts, PACs and political donations, pharma works to stop any legislation that could drive down its profits.

Pharmaceutical corporations attribute high drug prices to research and development costs. Yet insulin was developed nearly a century ago and has not undergone largely incremental changes since. The price of a vial, meanwhile, increased by more than 1200 percent from 1997 to 2016.

For Nicole Smith-Holt and her husband James Holt, Jr. whose son, Alec Rae Smith, died at 26 after rationing his insulin, the consequences of insulin prices are far too real. On September 30th, Nicole joined fellow activists in Indianapolis[2] to protest Eli Lilly’s continued price gouging. These activists advocated for better price transparency and voiced their concerns about high insulin prices. The Indiana protest showed that people are willing to speak out and come together to try to demand accountability from drug corporations for their actions.

Some lawmakers are taking on big pharma by introducing bills on price gouging, transparency and rate setting. In 2017 Nevada passed into law a bill that requires transparency for price hikes in insulin and other medicines necessary for people with diabetes. The bill was followed by a lawsuit challenging it on constitutional and intellectual property grounds. The lawsuit was dropped, but some speculation remains around how the law will be implemented.  At the federal level, the Stop Price Gouging Act, introduced by Sherrod Brown in Ohio, would put a tax on profits made on any pharmaceutical product that has a price increase beyond inflation.

These efforts face adversity. The Trump administration has voiced its concern over high drug prices, but the administration’s efforts to take on drug corporations remain small, or even counterproductive, in the grand scheme of things. Therefore grassroots mobilization and popular challenges to big pharma must be strong and resilient. Protests, like the demonstration at Eli Lily, are key ways we can build power. These should be coupled with legislative action and patient advocacy. Drug corporations will feign sympathy through letters, public statements, charity, publicity and even patient assistance programs – all while they continue to price gouge their consumers. For long term change, citizens, patients and elected officials must come together to hold drug corporations accountable.

[1] https://khn.org/patient-advocacy/#all-companies

[2] https://www.facebook.com/pg/t1international/photos/?tab=album&album_id=1837736979608352