09:00, 25 September 2024
Words by Tess Becker, Staff Writer, London
Humanity is an incredibly fragile thing. One moment goes by and your life can irreparably change. One bad bout of COVID, one bad car accident, one allergic reaction, and then you find yourself stuck with a chronic illness, your body’s health weaker than maybe just a day before. Chronic illness can reach us all.
According to the CDC, an estimated 129 million people in the US have at least one major chronic disease, affecting more than one in three people in the country. This includes things like heart disease, cancer, diabetes, obesity, and asthma. Of the top 10 causes of death in the United States, five are or are directly related to, preventable and treatable chronic diseases.
These statistics don’t factor in things like mental illness and socioeconomic factors that keep people from seeking healthcare, especially here in the US, both of which can exacerbate chronic illness. Depression for example can cause a higher risk of developing certain chronic diseases, including heart disease, diabetes, stroke, pain, osteoporosis, and Alzheimer’s disease.
Many chronic illnesses are the result of individual choices like excessive drinking, eating, or sedentary lifestyles, environment and socioeconomic background play a large role in that, like access to affordable healthy food, and access to leisure time.
All of this is to highlight just how prevalent chronic illness is. Entire lives can end up being shaped around diseases, how to treat them, how to afford treatment, and how to deal with the physical symptoms of said illness.
This leaves little room for self-advocacy in the doctor’s office, much less in the broader political conversation, and if people can’t speak up for themselves they may need someone else to speak up. This is something that an organization like Patients Rising is trying to do.
“We are the leading grassroots patient advocacy organization seeking comprehensive policy solutions that put the patient experience at the forefront of addressing America’s biggest healthcare access challenges,” they write on their website.
The goal itself is to stand up to powerful conglomerates controlling things like the prices of medications, the cost of which may price vulnerable people out of life-saving medicine. This is especially important in the United States where prescription drug prices are over 2 times more expensive than many other countries.
“Powerful [Pharmacy benefit managers] like CVS Caremark, Express Scripts, and OptumRx are squeezing patients and limiting access to affordable medications,” Patients Rising founder Terry Wilcox said in a statement. “These companies control the drug supply chain, financially manipulate prescription drug pricing, and apply discriminatory formulary practices to limit patient access and affordability to important medicines.”
PBMs serve as middle managers, working with insurance entities, and establishing drug prices.
“Lawmakers can ensure effective enforcement of antitrust laws and support legislation like the DRUG Act to end PBM predatory practices. Patients Rising urges action to ensure patients are at the centre of healthcare.”
As it’s shown, Patients Rising serves as some sort of benevolent lobbying entity, whereas lobbyists are generally viewed with at least some suspicion, they’re working in the best interest of the most vulnerable people. They even host an annual “patients fly-in” event where they bring patients they help to Washington, D.C. where they gather to advocate for comprehensive policy solutions that prioritize patients in the American healthcare system.
“Patients Rising is a grassroots patient advocacy organization dedicated to finding comprehensive policy solutions to improve patient access to healthcare,” a PR representative tells Smiley News. “They also operate a helpline staffed with ‘navigators’ who assist patients with everything from billing and medical bill support to arranging transportation to doctor appointments.”
The helpline is called the Patients Helpline Foundation.
On top of everything else, they also offer a course to help people learn how to become their own advocates.
“We have other online courses that help people with things like how to communicate better with your doctor, how to understand your rights as a disabled person in a workplace or higher education, and quite a variety of other things,” Jim Sliney Jr, Patients Rising Chief Patient Officer, tells Smiley News.
Everything Patients Rising works to do is in service of people that can’t always fight for themselves, or providing them the tools so that they can.
“They trust us enough to do that work, under our banner as volunteers,” Sliney says. “And oftentimes they end up being the same people who populate our fly-in events and things like that because these are often people who run their own nonprofit for a different disease or a different issue, so they come to us to gather and network and become stronger, and we never undervalue that.”
“That's quite a gift that they've given us.”
At Smiley Movement, we like to elevate the work of charities across the world. Here are three charities whose causes align with the themes in this article.
Macmillan Cancer Support. They provide specialist health care, information and financial support to people affected by cancer. Learn more here.
Rare Disease UK. This is the national campaign for people with rare diseases and all who support them. Find out more here.
The New Normal. This charity is a completely free alternative to one-on-one therapy. Changing the way we discuss our grief, mental health and well-being in open and honest spaces. Support them here.
