Survey Shows the Stigma is Alive and Well
In 2008, the Lung Cancer Alliance conducted a survey on people's perceptions about lung cancer. Ten years later, they conducted the same survey. The foundation wanted to learn how much perceptions about the disease have changed.
Public perception in 2008
In 2008, most respondents believed that lung cancer was (1) caused by external factors, (2) preventable, and (3) that patients were at least partly responsible for their disease. So, what do you think? Do you think the general public has gotten any smarter over the last ten years?
A total of 1,413 people took part in the 2018 survey. Just over 1,000 people from the general public and slightly over 200 lung cancer patients and another 200 oncologists responded to the questions.
What do the results show?
The results are mostly disheartening:
- 94% of those responding said they are familiar with the disease. (The deadliest cancer of all and there are people that still don't know it exists?)
- The stigma about which much is written continues to slam us. The percentage of patients who feel stigmatized by their disease increased significantly from 54% in 2008 to a whopping 70% in 2018.
- Sadly, a quarter of patients who responded to the survey believe that they would be treated differently by their loved ones if they were fighting a different kind of cancer. That's heartbreaking.
- 68% of the responding oncologists agree that there is a stigma associated with lung cancer. They felt that never-smokers faced a lower stigma than former or current smokers. (I am not sure I agree. Everyone I know who is fighting lung cancer, whether or not they have had a smoking history feels the stigma.)
- The stigma runs so deep that oncologists said that 67% of patients think they caused their disease. That's a 10% increase over 2008.
The survey did reveal some improvements over 2008:
- The majority (71%) of patients are happy with the treatment options and 87% reported satisfaction with their medical care.
- Oncologists feel much greater hope in 2018 than they did in 2008. Over half (52%) believe they have adequate treatment options to prolong patients' lives, compared to only 31% in 2008.
Progress against the odds
It is fabulous news that, against so many odds, scientists are finding effective treatments for lung cancer. They are working with far less money than available to other cancers, but that isn't stopping them!
But, I can't help but wonder what kinds of discoveries would be made if the terrible stigma against lung cancer and lung cancer patients didn't exist. The stigma affects how we are treated by others and perhaps worse, it affects how much funding the disease gets that can be invested in finding better ways to treat it.
What if stigma didn't get in the way?
What if lung cancer got the same level of funding that breast cancer does? Let's fantasize.
The National Institutes of Health (NIH) says that 51,103 people lost their lives to breast cancer in 2015. That same year, the NIH reports that 163,199 men and women died from lung cancer.
Funding allocated by the NIH for breast cancer in 2018 is $755 million. Dividing that by the 2015 mortality rate gives us a funding amount per death of $14,774 for breast cancer in 2018. (I realize I am using 2015 mortality rates and 2018 funding amounts, but 2018 mortality rates are not yet available.)
If we take the $14,774 per death that breast cancer gets and multiply that times the number of people who lost their lives to lung cancer in 2015, a whopping $2,411,102,026 would be available to researchers to invest in finding cures for lung cancer in 2018. Instead, the NIH has chosen to invest only $380 million in 2018.
The numbers don't add up
I.do.not.understand. Can anyone - anyone - explain to me why the deadliest cancer of all gets so little funding? Why doesn't the NIH take the pot of money allocated to them by Congress and simply divide it out among the various cancers based on the number of people who succumb to each one? Wouldn't that be the fairer way to do it?
And here's my real question. What can we do about the discrepancy? How can we ever get Congress to ensure that lung cancer gets the funding it deserves?
Do you find that staying zen through your lung cancer diagnosis has helped you in your journey?