Is this true? Komen claims 30% drop in BC mortality rates

by Ginny Knackmuhs, MBCN Vice President

Recent commercials for the Komen 3 day walk make this claim: a 30% drop in breast cancer mortality rates since the early 90’s due to early detection. Is this true?

According to Wikipedia, mortality rate is a measure of the number of deaths in a population, scaled to the size of that population, per unit of time. Mortality rate is typically expressed in units of deaths per 1000 individuals per year. So a breast cancer mortality rate of 31.6 in 1992, for example, means there were approximately 31 deaths for every 1000 individuals living with breast cancer at that time.

Statistics can be very confusing. When I first saw this claim of a 30% drop in mortality back in 2011, I was shocked and sure that Komen was wrong. Did this mean that 30% fewer people were dying from breast cancer? That sounded too optimistic.  I wrote to my friend who has a masters in applied math and economics and she enlightened me:
The mortality rate in 1992 was 31.60 and on average has dropped 2.2% every year. In 2008, for example the mortality rate was 22.14. Over that 17 year period, the mortality rate dropped by 9.46. (31.6 in 1992 minus 22.14in 2008= 9.46) See charts below:

So what about the 30%? Shouldn’t it be 9.46%? Ahh…welcome to the mysterious world of  statistics.

The % change in the mortality rate that Komen is quoting is calculated differently. It is a % of a % calculation. The actual rate change of -9.46% is divided by the original rate of 31.6%, giving a % change in mortality rate over 17 years of (-9.46/31.6) or 29.9% change. This is the figure that Komen is referencing. (30% drop in BC death RATES over a given period of time)

Here’s a simpler example. If we raised the tax rate from 5% to 10%, we have doubled the rate (100% increase because 5% change divided by the original 5%rate = 100 —also look at it this way: 10 is twice 5, a 100% increase) although the actual rate change is an additional 5%. If you were the angry taxpayer, you would probably report this as a 100% increase in your tax rate, rather than saying it was an addition of  5%. Both are accurate statistically, but you can see the potential for spinning the numbers to support your campaign.

I read another example in the newspaper this morning. The headline said: “ADHD cases up 24% in a decade.” I immediately envisioned almost a quarter more of ADHD children, the same way I envisioned 30% fewer people dying from breast cancer. Neither is true. The ADHD article went on to explain the basis of the 24%: “The disorder was detected in 3.1 percent of children who received care at Kaiser Permanente Southern California in 2010, compared with 2.5 percent in 2001, according to the study, published Monday [1/20/13] by the journal JAMA Pediatrics.” In other words, 2.5% rose to 3.1 %, an additional .6%, but compared to the initial rate, a 24% change in rates (.6%/2.5%= 24%)

I told you it’s confusing!! You can usually find some statistic to make your position look good. That being said, in the metastatic bc community, we usually focus on the NUMBER of people dying and not the RATES. Despite early detection and advances in treatment, the actual number of deaths over the last 20 years has remained essentially unchanged, hovering around 40,000 deaths per year.

NBCC explains it this way:

Truth #5: Breast cancer mortality rates are declining

TRUE. Breast cancer death rates changed little between 1930 and 1990, but decreased 27% from 1990 to 2005.

Between 1994 and 2003, the mortality rate for women of all races combined declined by 2.4% annually. In white women, breast cancer mortality declined by 2.5% annually. In black women, mortality declined by 1.4% annually during the same period. Some good news, but remember there are still 40,000 women who will die of breast cancer this year.

While these statistics are encouraging — we don’t actually know why mortality rates decreased. We need more research to figure out what factors led to the reduction in death from breast cancer so that we may continue the downward trend — and we need to make certain it’s the same for all women. We must continue pushing to find out what causes this disease.

Komen attributes all of the change to early detection. Certainly changes in treatment have also helped. The American Cancer Society 2011-2012 report states: “The decline in breast cancer mortality has been attributed to both improvements in breast cancer treatment and early detection.”

What’s the lesson here for those of us living with metastatic breast cancer? I hope after this little math lesson that you are forever grateful that you don’t have to sit through Statistics 101! My friend the economist who explained all this to me, ended her email, saying: “Hope this helps.  Anyway, it would make me much happier if the mortality rate were 31.6 – 29.9!”

I hope you understand better the statistics being quoted and will read articles closely in the future, where the same type of statistic is used. While legitimate statistically, the percent change in mortality rates hides the reality of a hard core of stage IV patients who continue to die. After forty years of research in the War on Cancer, we still don’t know what causes breast cancer or what causes it to spread. We need to continue to advocate and raise awareness of metastatic disease and the lack of progress in preventing and stopping metastases.

Meet Shirley Mertz, MBCN’s New President

By Katherine O’Brien

Shirley at the 34th Annual San Antonio Breast Cancer Symposium

At a 2009 breast cancer seminar, I met two Chicago-area MBCN volunteers: Joani Gudeman and Shirley Mertz. I had never met another person with metastatic breast cancer. Joani and Shirley made me feel less alone. Their activism inspired me.

The meeting was held in a hotel ballroom on a Sunday morning. There were several hundred people in attendance and most were casually dressed. Shirley, however, was  professionally attired in a perfectly tailored suit. Who would get dressed up on the weekend? Certainly not me. But there was Shirley, dressed for success. Although she was not part of the medical panel fielding questions, Shirley was summoned to the stage to read a proclamation about October 13,  National Metastatic Breast Cancer Awareness Day.

In 2008, Shirley and her fellow volunteer, the late Susan Davis,  launched MBCN’s drive to formally establish October 13 as National Metastatic Breast Cancer Awareness Day. In October 2009, they succeeded: The Senate and House each unanimously passed a resolution to support that designation.

I remember watching Shirley striding purposefully to the stage. She absolutely belonged up there–she commanded attention and respect. Almost a year later, I met Shirley again in Indianapolis at MBCN’s  2010 Annual Conference on Metastatic Breast Cancer. Again, I was struck by Shirley’s leadership–she moderated several sessions. As I got to know her a little bit better, I saw flashes of Shirley’s humor–and that made me like her even more. She’s serious in her advocacy efforts, but she enjoys a good joke and will often tell one on herself.

In 2011 and 2012 as I did more volunteer work with MBCN, I learned that Shirley, a former high school principal from northwest suburban Chicago, also earned a law degree. I don’t think Shirley divulged this information–she did share, however, that she is a proud graduate of the National Breast Cancer Coalition’s (NBCC) Project Lead, a science training program for activists. Shirley became a consumer reviewer for the DOD Breast Cancer Research Program and advocate for national health care reform. In 2008, she personally asked Senator Evan Bayh to sponsor a Senate Resolution for MBC Awareness Day and then co-chaired the team that traveled to Washington to lobby for Congressional passage. In 2011, she was honored as a Champions of Change in breast cancer at the White House.

Shirley Mertz with the University of Chicago’s Olufunmilayo Olopade, MD

Shirley was diagnosed with metastatic breast cancer in 2003, twelve years after being treated for DCIS. Like me, she wanted to meet other people dealing with a diagnosis of metastatic breast cancer. She was appalled to learn how few resources existed and determined to make a difference. “My passion is being a voice for metastatic breast cancer patients,” Shirley told me. “I have not hesitated to share my experiences with this disease because I want to motivate others to speak up. Joining together with a focused message, metastatic breast cancer patients can improve outcomes in the clinic.”

Shirley’s own story illustrates some key messages for people with metastatic breast cancer. “Allow yourself time to cry, then put on steel armor and learn to take charge of your care,” Shirley told a University of Chicago interviewer. ” You must be your own advocate.”

After her recurrence, Shirley’s former oncologist based her treatment on the biological characteristics of the 2003 tumor. But it was clear the treatment was failing. Shirley lobbied for a new biopsy–and ultimately got one, after pursuing a second opinion. The biopsy revealed the pathology of Shirley’s cancer had changed–it wasn’t the same subtype as her original diagnosis.   “A great oncologist will never be offended if you ask for a second opinion,” she says. By sharing her story, Shirley has helped untold people.

Earlier this year, MBCN named Shirley as its president. In addition to targeting underserved areas of the US, she’s committed to raising the group’s profile with metastatic researchers. “If scientists could meet us and personally hear our needs, that would be a powerful message,” she says. “With the board’s help and enthusiasm, we will take our commitment to patients to another level.”

You go, Shirley!

Katherine O’Brien is MBCN’s Secretary and Public Relations Chair