Navigating the Cost of Cancer
- Johnnett Kent, 49, was diagnosed with lung cancer during the pandemic. The non-smoker underwent surgery to remove a part of her left lung, chemotherapy and radiation for treatment.
- Before she had even received the diagnosis, Kent also buried her mother, crashed her car and lost her job due to COVID-19. She was struggling financially, but an oncology social worker helped connect her with resources that got her through her cancer battle.
- The financial burden of a cancer diagnosis can be debilitating. Crowdfunding works to help with the financial burden of cancer in some cases, but these methods are not always reliable. Having a medical advocate in your corner for insurance purposes and connecting with social workers and foundations may be more dependable ways to alleviate financial stress from a cancer journey.
“Last year was the worst year of my life,” Kent said in a recently published video.
Read More“When I got my diagnosis I had nothing,” she explained. “I didn’t have a car. I didn’t have any way to pay my bills. I didn’t have any way to pay my rent. I didn’t have any food. I didn’t know how I was gonna pay for this surgery. I had absolutely nothing, and my family was 3,000 miles away. I had no idea what to do.”
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But Kent did not give up. She called the American Cancer Society helpline and finally started to see some answers.
“It was the best thing that I could have done,” she said. “After the phone call, I felt peaceful, and I found my oncology social worker. She was the one who actually put me in touch with financial resources, food resources, health resources, even mental health resources. Resources that were vital to me fighting cancer.”
Navigating the Cruel Cost of Cancer
Resources are essential to a successful cancer battle, but, unfortunately, resources can bear a heavy cost. Thankfully, there are places to turn when the bills start piling up. Some people look to various crowdfunding methods with online platforms such as GoFundMe, and others actually turn to spaces like the cryptocurrency world though the price of cryptocurrencies is generally erratic, meaning that price stability can be an issue.
"A lot of people in crypto made a lot money over the last year," Sam Bankman Fried, CEO of a cryptocurrency exchange company called FTX Exchange, said in a fundraising livestream. "And, you know, I think that it took a lot of pressure off of people's personal finances and sort of gave them the space to think about how they could help others."
But crowdfunding, in general, can be a tough way to raise funds during a loved one's cancer battle. According to a study conducted by researchers at the University of California San Francisco, GoFundMe efforts often fall short. The study found that the average "goal" for patients on their GoFundMe pages is $10,000, but the average amount raised is less than a quarter of the goal at $2,125. Some people find great success with crowdfunding, but the success stories can be few and far between.
Speaking with social workers affiliated with your cancer center can be an option for people who don't like the unpredictability of crowdfunding efforts. And as we’ve seen in the case of Kent and many other cancer warriors, they can be a huge help. Oftentimes, they can help guide patients to helpful resources when the financial burden of cancer becomes too great. Patient assistance programs, for example, can be beneficial. Your social worker might point you to one of these programs when it comes to specific, expensive drugs because some pharmaceutical companies offer to help patients cover the cost.
Reaching out to various foundations can also be a viable option for cancer patients. There are many nonprofit and advocacy organizations that offer programs to help financially support a patient's cost of care. The Lazarex Cancer Foundation, for example, helps patients cover costs associated with clinical trials and other organizations like the American Cancer Society and the Cancer Support Community may help with travel costs for treatment.
Regardless, it's always a great idea to explore your options and talk to people who might be able to help. Dr. Allyson Ocean, a medical oncologist at Weill Cornell Medical Center, recommends finding an advocate within the medical field when dealing with costly medical bills. Speaking from experience, Dr. Ocean knows having a medical advocate in your corner can make all the difference. She calls insurance companies all the time to help her patients get the treatment they need covered by insurance.
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"My best advice to work around the system of whether or not drugs or tests can be covered for cancer is to make sure you have an advocate in your field working for you," Dr. Ocean says. "The frustrating part for me is that sometimes we even have to educate the insurance companies and say, 'There's a reason why I want to use this medicine.’"
Understanding Lung Cancer
Lung cancer, the second most common type of cancer, is the leading cause of cancer deaths for men and women in the United States. Diagnosis and treatment of the disease can be tricky since symptoms often don't appear until the cancer has spread. An initial symptom, for example, could be as serious as a seizure if the lung cancer has already spread to the brain. But other symptoms can include increased coughing, chest pain, unexplained weight loss, shortness of breath, wheezing, losing your voice or persistent infections like bronchitis or pneumonia.
The two main types of lung cancer are non-small cell, which makes up 85 percent of cases, and small-cell. These types act differently and, accordingly, require different types of treatment. Dr. Patrick Forde, a thoracic oncologist at Johns Hopkins Medicine, tells SurvivorNet about how distinguishing between the two types and their subtypes can be very beneficial.
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"Within that non-small cell category, there's a subtype called non-squamous adenocarcinoma, and that's the group of patients for whom genetic testing is very important on the tumor," he explains. "Genetic testing is looking for mutations in the DNA, in the tumor, which are not present in your normal DNA."
Non-Smokers and Lung Cancer
Kent was shocked when she received her lung cancer diagnosis.
“I have never smoked a day in my life, like never,” she said. “So, I was confused.”
Declining smoking rates have lead to an improved outlook for lung cancer since cigarette smoking is the number one risk factor for the disease. In fact, The Centers for Disease Control & Prevention states that cigarette smoking is linked to about 80 to 90 percent of lung cancer deaths, and people who smoke cigarettes are 15 to 30 times more likely to get lung cancer or die from lung cancer than people who don't smoke.
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But it's important to remember, however, that even people like Kent who've never smoked before can still get lung cancer. The CDC reports that in the United States, about 10 to 20 percent of lung cancers, or 20,000 to 40,000 lung cancers each year, happen in people who've never smoked.
"Some lung cancers are from unknown exposure to air pollution, radon, or asbestos," Dr. Raja Flores, system chair of thoracic surgery at Mount Sinai previously told SurvivorNet in a previous interview. "We also see more never-smokers with lung cancer who have a family history of it."
Radon is the second-leading cause of lung cancer. It's responsible for anywhere from 3 to 16 percent of cancer cases depending on the levels present in a given area, according to the World Health Organization, but smokers are still 25 times more at risk from radon than non-smokers.
Another possibility for the cause of lung cancer in a non-smoker can be second-hand smoke. The American Cancer Society estimates that about 7,000 adults die of lung cancer annually from breathing secondhand smoke.
Air pollution, family history, HIV or AIDs can also all impact the chances of a non-smoker getting lung cancer. No matter what, it's important to not rule out the disease just because you don't smoke a fact that Donna Hunting knows all too well.
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