Medical science has reached a point where a cancer treatment is not a diagnosing tool, but rather a way to track progress.
That’s a trend that has begun to become more common in recent years, as patients who had previously been diagnosed with cancer but had not yet been able to follow-up with their doctor and receive treatment continue to struggle to get the proper care.
And the lack of follow-ups can have serious consequences, from a patient’s long-term health to the patient’s finances.
“If I can’t see you, I can see the cancer,” said Elizabeth Kostecki, a cancer patient who has been living with metastatic melanoma for years.
She’s now in remission, but her family has not been able for some time to access their benefits and they’re having to live with the financial burden.
“I have to work for my life, pay for my own healthcare,” she said.
Kostencki and her husband, who is also in remission with metastasis, have struggled to find care.
Her cancer diagnosis has left them with a debt that’s more than $50,000.
“They are having to go to all the doctors to see their doctors, they’re not able to go home, they can’t make the monthly payments and they are not getting their medications and the treatments they need,” she told Al Jazeera.
Kusteki has become a regular speaker at local health fairs to try and get attention to the problem.
“It’s a real problem,” she says.
“There’s no one out there that can do this.”
A diagnosis of cancer can also be used as a form of bargaining power.
“When you go to the doctor, there’s no way to negotiate the treatment,” said Kosteki.
“You have to go through the doctor to get your treatment.”
A number of countries have passed laws to prevent patients from using cancer diagnoses as bargaining chips, but in the US, there are no rules.
The FDA has yet to come up with a single law that would prevent a patient from using a diagnosis of metastasis as a bargaining chip, although it does consider a patient has cancer if they have been diagnosed in the past.
In 2017, US senators introduced a bill that would make cancer treatment the first form of disability compensation.
“In many states, patients can use a diagnosis to gain access to certain forms of compensation, such as medical bills and unemployment benefits,” the bill states.
“As a result, the patient can leverage that diagnosis in order to negotiate compensation for other medical costs, such the cost of treatment.”
Kostepka said that is something that should be illegal, but that doctors, hospitals and other providers are hesitant to change the system.
“The reason I don’t want to go back to the way things were is because I don