Karina and Tom live in Florida and have two kids ages 10 and 14. Karina is 45 and works part time in administration at a
Law Firm. The other half of her time she's taking care of her kids, volunteering with local organizations
and caring for her aging mother.
Tom is 43 years old and works as an engineer at a construction company. Construction is down
lately and he's been worried he may loose his job. His company just had company-wide paycuts
due to the downturn. He's been thinking of trying to find another job.
The financial impacts associated with breast cancer, and other cancers alike, effect all patients but are especially impactful on the lower middle class. They are a portion of the population who earn too much to be covered by medicaid but don't earn enough to have the savings necessary to weather the costs and financial losses associated with a drawn out treatment regimen. With heath insurance tied to their jobs, a job loss during treatment- either related to the illness or simply bad timing- can cause a financial spiral into bankruptcy.
Even with insurance intact, the additional costs associated with being sick, such as over the counter medication, wigs, etc., coupled with lost wages from having to take time off for treatment and rest, can quickly deplete a family's meager savings to zero.
This bill was sent to me by a woman I interviewed for this article. It's for just three weeks of her treatment. While the bottom line indicates that she's only responsible for $17.65, were her husband to lose his employer sponsored insurance, they would be responsible for the entire amount.
The skyrocketing costs of pharmaceuticals are a major culprit in the financial burden to the patient. Cancer pharmaceuticals are getting steadily more expensive but the improvements in life expectancy are not nearly keeping pace. In a study of 71 drugs to treat solid tumors the median improvement in progression free survival was just 2.3 months. Pharmaceutical companies claim that they need the extra income for R&D yet regularly pocket double digit profits greater than the finance industry. The money they do reinvest in the company usually ends up more in marketing budgets than R&D budgets. Pharmacuetical companies, instead, rely on government funding for R&D.
The fear and stress associated with the financial impacts of the disease affect nearly all patients. Stress is well known to inhibit healing. Employer tied health insurance coupled with skyrocketing costs of medicine lead to a toxic financial situation for patients and their families.
This is Karina and Tom's pre-illness budget breakdown. Tom makes a good wage and they have managed to keep their expenses low. They tend to spend their remaining money on travel and leisure activities.
Source: http://www.epi.org/resources/budget/ (Jacksonville, FL)
Diagnosis
Breast Cancer rates among older women fell in the early 2000s but have lately started to rise again.
Rates for younger women have stayed unfortunately level. At 45 years old, 123 out of 100,000 women
will develop breast cancer.
Cancer Rates By Age Group in the US (per 100,000 ppl)
Insured Rates among Americans in 2016
Nearly half of all American's insurance is tied to their workplace. Insurance plans vary significantly from one to the next. Further, Medicare and Medicaid also differ in how they cover the costs of cancer. Astonishingly, 9% of all Americans had no insurance coverage in 2016. That's 28 Million people who would need to pay out of pocket for their cancer treatment.
Insurance Rates Amongst Americans (2016)
source: Kaiser Family Foundation
Karina and Tom are lucky enough to have insurance through his job for now. They pay $4,378 per year in premiums and have a $2,811 deductible. They are also responsible for the various copayments the insurance company requires each time they see a doctor. While they were both working, they could afford this amount without much struggle. But now that Karina is sick she's had to cut back on her hours and there are more expenses. Their insurance plan has a life-time cap on out-of-pocket expenses but that doesn't cover the:
- Travel
- Nonprescription medications
- Extra childcare
- Lost wages
- Special Diets
- Wigs and prosthetics
This is Karina and Tom's budget breakdown now that she has cut back on her work and with her added medical expenses.
Source: http://www.epi.org/resources/budget/ (Jacksonville, FL)
Do Americans Have Enough In Savings to Cover the Costs of Cancer?
The overall cost to a patient and her family
varies dramatically depending on
- Insurance Status
- Location
- Race
- Stage and Type of Cancer
A study of women with breast cancer in LA from 2005 to 2007, who had health insurance of some kind, found:
35% had out of pocket expenses greater than $2000
12% reported increased debt due to their treatment
5% had their utilities turned off because of upaid bills
In 2017 the average American had less than
$1000 in savings.
Karina and Tom, like 57% of Americans, have very little in savings. They currently have just under
$1000 in savings and were hoping to start putting away more as their kids get closer to college.The
added health care expenses they experience will need to be paid for out of his wages, her reduced
hours and, likely, debt.
Financial Assistance
Meeting with the Counselor
Many hospitals have a Counselor who meets with patients to help them deal with the emotional and financial burdens of their cancer treatment.
In a study of breast cancer patients, 53% reported that it was important to avoid changing jobs because of worry about losing health insurance. 25% said they would look for a new job only if they could be assured of comparable benefits.
Charitable Donations
Counselors help patients find charitable donations- a lifeline for many patients. Even those with insurance, often need help to cover the added costs of the disease, that are not covered by insurance, like extra childcare, help with housekeeping, lost wages for time they had to take off work, etc.
While receiving her chemo treatment, Karina must use the time to fill out applications to charitable organizations for financial aid.
The Cost of Pharmaceuticals
The cost of pharmaceuticals is a major component of the overall cost of healthcare today. For patients diagnosed with later stage cancers, chemotherapy accounts for the majority of their insurance-covered healthcare costs, especially after year one of treatment.
Financial Coping Mechanisms
Karina and Tom will need to either stay on Cobra insurance or shop for insurance on the exchange under
the Affordable Care Act. If they elect to stay on Cobra they will be responsible for the full $16,009
annual premium that Tom's employer used to pay. Cobra will also only cover them for
18 months.
Under the Affordable Care Act they, luckily, cannot be denied insurance on the open market because
of Karina's pre-existing condition. If they do decide to look for insurance on the insurance exchange
in Florida, however, they will be in for
$555 per month for the premiums for a
middle of the road plan. Additionally they will need to cover the
$4,000 deductible plus the
$11,700 out-of-pocket limit for the year. This is after the subsidies provided under the ACA.
Tom's unemployment will
max out at
$1,100 per month.
This is Karina and Tom's budget breakdown now that Tom is out of work. His unemployment income doesn't come close to covering their expenses now. They've done what they can to cut back but there's only so much they can cut back on at this point. They're now $2,698 under water each month.
Source: http://www.epi.org/resources/budget/ (Jacksonville, FL)
Their meager savings are shot. Tom's out of work. Karina's going to need to stay home to recover from her double mastectomy and reconstruction. What do they do?
Women, and their families, deal with the financial burden of treatment in different ways depending on their situation. All the coping mechanisms are impactful on the patient and her family and distract from the real work of healing and surviving.
Some common ways that women and their families cope are:
- Obtain samples from doctor
- Shop around at pharmacies for the lowest prices
- Spread out clinic or chemo appointments
- Ask doctor for less expensive medication
- Purchase over-the-counter medications to replace prescriptions
- Reduce spending on basics like food and clothing
- Borrow money or use credit to pay for medications
- Use all or a portion of savings to pay for cancer care
- Fill only part of the prescription
- Choose one doctor over another for price
- Decide not to have recommended test
- Reduce spending on leisure activities like vacations, eating out or movies
- Don't fill the prescription
Failing to adhere to the recommended treatment program can reduce its efficacy and prolong the disease. Rest and leisure activities during and after cancer treatment should not be a luxury and are critical to reducing stress which is correlated with improved health.
So, what happens to Karina and Tom?
Karina and Tom are a fictional couple, but they are based on real women and their families. Millions
of women and their families face this question every day. Do they go into debt? Do they sell their
house? Do they declare bankruptcy?
What would you do?
Karina will survive her bout with cancer. She will recover physically but the cancer could still
come back any time. As long as their insurance is tied to their jobs, Karina and Tom's careers will
be inextricably linked to the need for health insurance. As long as the ever increasing costs of
pharmaceuticals are passed onto the insurance consumer, Karina and Tom will not likely be able to
afford insurance on the private market.
Solutions
There are many factors that contribute to the financial impact of breast cancer. Policy solutions have been proposed to address a variety of them.
The Cost of Medications
The lion's share of cost to treat breast cancer comes down to the cost of medications. Pharmaceutical companies use the patents they hold on the cancer medications to protect the prices they charge.
Extensive research has been conducted to study how to reduce the stranglehold while continuing to encourage innovation
Some solutions that have been proposed are:
- Delinkage
- Patent Pooling (watch a great video about it here)
- Allow Medicare to negotiate drug prices as Medicaid and all other insurance companies are allowed to
- Allow drugs to be imported from countries where they are sold at reduced prices
- Find even more information about the issue of pharmaceutical patents here
Health Insurance
As with the cost of pharmaceuticals, the issue of health insurance is complicated. Throughout this research, however, two questions consistently floated to the top.
Why should a person fighting to survive cancer feel that they have to work just to keep their insurance?
Why should your health be tied to your job?
A solution to this problem is
universal healthcare (single-payer)- health insurance provided by the goverment to all
citizens. All citizens are, therefore, guaranteed the right to healthcare. This would allow the
the government to negotiate with pharmaceutical companies as one large block instead of individual
health insurers negotiating piecemeal. The government already negotiates with the pharmaceutical
companies through Medicaid but at a much smaller volume. Pharmaceuticals are
significantly more expensive in the United States than in other countries where healthcare
is universal.
Learn more about universal healthcare
here
or
here.
Learn more about how America is the only industrialized country without single-payer healthcare
here.
What can you do?
Contact your elected officials and call for more consideration of the solutions listed here. It's only through the voice of the citizens that the elected officials are guided on the right path.
Find out how to contact your elected officials here
Sources for the Cost of Pharmaceutical Section:
The High Price of AntiCancer Drugs: origins, implications, barriers, solutions
Pertuzumab Not Cost Effective in Metastatic HER2-Positive Breast Cancer
Most Profitable Industries in 2015
Big pharmaceutical companies are spending far more on marketing than research