Fucking Cancer

Maria

Posted on by Beth Caldwell

I should be writing about the San Antonio Breast Cancer Symposium that I attended this week. I learned things, I hugged people, I made new friends, I saw old ones–and we made our voices heard. But that’s not what’s on my heart today. Today, Maria is all I can think about.

Maria Carballo and I met at the Living Beyond Breast Cancer conference last year. She was funny and beautiful and sassy, and I immediately liked her. She was part of a group of us that tried to sneak into the ballroom dancing competition that was happening at the same hotel as the conference (we failed, but we all complimented the dancers on their amazing asses). She sat at the dinner table where we decided to do the die-in at the conference. 

And today she died. She was just 41.

I’ve written before about how much living with metastatic breast cancer is like having AIDS in the early 80’s. But today I’m really feeling it, how the band is marching on, while there is a crisis of women dying and dying and dying. I’ve had three friends die in the last three weeks. I have two more friends in hospice right now. 

And I can’t tell you how many people have told me and my friends this week not to piss off the researchers, not to be too loud, that they’re trying plenty hard enough, that we don’t want to alienate them. That we should be grateful we’re not in the radical mastectomy era anymore, that things are so much better than they used to be, that 6 months of extra life is a major success, that we should be grateful for those 6 months on a toxic treatment that leaves us unable to parent our children, unable to bear children at all. That we aren’t arguing strongly enough and that’s why we’re dying. That we should just join a clinical trial, that if we don’t we can’t expect any breakthroughs, even though we don’t actually qualify for any trials because we have brain mets and we’re too heavily pretreated, and even if we did, we don’t live in New York or Houston or Boston where most of the trials are. 

That there’s exciting research happening on our corpses.

So many excuses for why Maria is dead. Why Michelle is dead. Why Seporah is dead. Why Lisa is dead. Dead. Dead. Dead. Dead. Dead. Dead.

How many more of us have to die before someone does something to stop this? How many more tears must we shed before someone listens? When will the excuses and the patient-blaming end? When will there be a sense of urgency? When will all this death stop?

I don’t know how much more of this my heart can take before it’s permanently broken. Before I can’t pick myself up and keep fighting and fighting and begging for help.

HELP US. PLEASE, PLEASE, PLEASE, SOMEONE HELP US.

Xeloda is my new best friend

Posted on by Beth Caldwell

A brief update, because I couldn’t leave you all hanging after that last post about my scanxiety! The brain MRI showed that all those pesky brain mets are either gone, or they’ve been treated and no longer are cancerific. WHAT WHAT!!! I’m over the moon, you guys. And now I just keep trucking on my Xeloda, which so far has come with minimal side effects (I have grown to love this website for inspiring the phrasing in my emails to #bestdocever about my poo) despite my extra high dosage. My next brain MRI will be in 8-10 weeks unless something happens in the meantime. 

This week has been really hard–I’ve been feeling really…fragile. I told #bestdocever that he’s not allowed to tell me about my tumor markers anymore, and he promised he won’t. But now that we know those tumor markers were right and I can keep with this treatment, I’m so much more calm. SO much more calm.

A huge huge huge THANK YOU to everyone who has sent their love and support this week. I have THE best readers in the world!!!

Scanxiety and Hope

Posted on by Beth Caldwell

I haven’t had bad scanxiety recently. Mainly because, I expected my scans to show the cancer is growing. When they did show it growing, I felt shitty–but not before the scan, just after, when I knew the results. 

This week is different. Because things have been going well so far on Xeloda. I never ask about my tumor markers, since I know they haven’t been an accurate reflection of what my cancer’s up to. But this weekend #bestdocever called to say that although he still doesn’t trust my tumor markers, they’re so far down now that he felt like he should tell me about it. This is good news, of course. Tumor markers down is better than tumor markers up, even if down may not mean anything, and way down is definitely a positive sign. We’ll know better when I have my brain MRI on Wednesday.

Problem is, I have a very complicated relationship with hope these days. I’m planning a big vacation for my family next summer–a visit to New York City, crossing on the Queen Mary 2, visiting London, taking the sleeper train to Inverness and exploring the highlands and Edinburgh before flying home–and thinking about it is both exciting and terrifying. I am so excited about the idea of this trip, and so terrified it won’t happen, because I’ll be too sick, or worse. I hope we’ll go. And hope is hard. Because hope acknowledges the possibility that what I hope for won’t happen.

I think that’s why, before most of my scans, I just expect the worst. Being let down by my body over and over again is hard. I don’t hope that the scan will show something good, because it’s just too hard to pick myself up when the scan shows more progression.

But this time is different. This time there’s a legitimate reason to hope: those plummeting tumor markers. I can’t help but hope in the face of hopeful data like that. And so I’m terrified of what those scans will show. I find myself distracted and weepy when I should be engaged with the kids. I start to worry, what if the scan shows something bad–instead of my usual acceptance that it WILL show something bad. What if there are too many brain metastases now for gamma knife to be an option? What if we run out of drugs that work on my brain?

I know this sounds completely fucked up, to be sad and anxious because of good news. But everything in the world of cancer is completely fucked up. Losing two friends and having two others enter hospice in the span of a month, when you’re not even 40, is completely fucked up. Having a 4 year old who knows what an oncologist is, is completely fucked up. So why wouldn’t my feelings about good news be completely fucked up? 

It would be nice if Wednesday could get here as quickly as possible.

Memory

Posted on by Beth Caldwell

I’ve lost my short term memory. Let me give an example of what this is like: the other day, I spent a half an hour looking for my warm coat, the one I get compliments on every time I wear it (thanks, ModCloth–secret of all my fashion success), and still couldn’t find it, so I gave up and went out with my raincoat instead and was cold all day. I’d hung my coat in the bathroom, not its usual place, and so I couldn’t find it. Could. Not. Find. It. The Boy spotted it that evening or I’d probably still be looking for it.

I now have to write everything down or I’ll forget about it. Thank goodness for technology–if I didn’t have a calendar I could check every morning to remember what my plans for the day are, I’d miss every doctor appointment, every phone call with a reporter, every lunch with a friend. If I don’t immediately respond to a text, I’ll forget I received it and never respond at all. I’ve had to warn everyone in my life that I’m not ignoring them on purpose, that it’s not a Seattle No, it’s just that I can’t remember anything.

I talked to #bestdocever about it, and he thinks it’s chemo brain from the carboplatin I was on this summer. I fucking hate carboplatin. It ate my whole summer. It’s left me still needing blood transfusions from time to time because it gutted out my bone marrow and I keep getting extreme fatigue from having low red blood counts. And then there’s the chemo brain. 

It’s scary not being able to remember anything that’s just happened. It’s not like going into a room and forgetting why you went in there–that happens to everyone as they age, and I can joke about it. No, this is something more insidious. It feels like it’s changing my personality. I used to be so on top of things, but now…in fact, I just told The Hubs something and he said, “Yeah, you told me that yesterday.” And I don’t remember telling him, at all. I’m probably that annoying person at parties who tells the same story over and over again, and I don’t even know it.

The good news is, #bestdocever thinks it’ll get better the further I get from the carboplatin. It takes 6-12 months for it to improve, if it’s going to improve. But that “if” is scary and I have plenty of friends for whom it never improved. The collateral damage of cancer treatment is lasting. It’s brutal and nasty and so incredibly unfair, especially for those of us who are going to die anyway, and the treatment is only buying us time, at a terrible cost.

Science: please help us. We’re suffering. Please find us better treatments, so we don’t have to live and die this way.

Komen and Privilege

Posted on by Beth Caldwell

I lied. I have one more thing about Komen that drives me away from supporting them. It’s the way they have treated metastatic patients over the years. It’s a story of privilege that others in the disability community and in other disempowered communities will probably find familiar.

Let me give an analogy. I am a white person. A really white person, like, loves ranch dressing, has Mayflower ancestors, whitey white white person. I am also someone who sees racial injustices, like the Indian Heritage High School program being dismantled in my city despite its many benefits to students from a community that needs and deserves support. Now, as a white person, I know I have a shitload of privilege, and the right thing to do is to use my privilege to help a community that doesn’t have privilege.

What’s the best way to go about that? Well, the way white people have done it for centuries it to say “I know what’s best for you and I will make the decisions and you will do what I say because it’s for your own good.” This would be the absolute wrong way to go about helping. First off, unsurprisingly turns out white people didn’t know shit about what’s best for people of color. They might have thought they did, but they didn’t, because they never fucking listened to the people they thought they were helping to find out what they actually need. Second, it’s fucking disrespectful to people of color to treat them like children instead of equals. 

Instead, what we white folks need to do is listen to communities of color. We need to hear what they want from us to help their communities thrive. We need to see them as partners in this multicultural society, and find ways to work together.

It’s a similar situation for people with metastatic breast cancer. There is so much in our experiences that is about a loss of autonomy–we slowly (or sometimes quickly) get sicker and sicker as time goes on, and cancer takes away our freedom of choice more and more. I often feel powerless in the face of my disease. 

Komen, and frankly the medical establishment at large, says it wants to help us, but too often it doesn’t ask us what we want. Komen continues to spend its vast resources on things that don’t save lives while saying “We care about you and we want to help you.” But until very recently, they haven’t sat down with metastatic patients and said “How can we best serve your community?” Instead, they have just continued to insist that early detection saves lives. But whose lives? Not mine. Not the 40,000 women who die every year. It feels very insulting, and very disempowering, when the largest breast cancer charity in America dismisses the very people it claims it wants to help. 

Slowly things are changing with Komen. They’ve been listening to some friends of mine, and I am grateful for that–and I hope they will truly listen and begin building bridges to the metastatic community. But their messaging about breast cancer being cured by screening, their lack of funding for research, and their lack of a sense of urgency about metastatic disease make it impossible for me to see Komen as an ally. Komen has a lot of privelege, and it needs to realize that it’s been treating metastatic patients disrespectfully. It’s time for Komen to listen to our requests and begin to take actions that show its commitment to partnering with the metastatic community that it claims it wants to support.

How Komen Must Change to Get My Support, Part 4

Posted on by Beth Caldwell

This is the last in my series, and I feel very strongly about it, so I’m going to use a strong language. I believe Komen is lying to people about breast cancer. What is a lie? It’s a deliberately false statement. It’s intentional, and it is designed to mislead. And Komen does it ALL THE TIME.

Would you like some examples to back up my claim? Here we go.

This image appeared on Komen’s Facebook page.

  
False. In 1980, the 5-year survival rate for ALL breast cancers, not early stage breast cancers, was 74.8%. The survival rate for all breast cancers today is 89.4%. In addition, the graphic doesn’t explain what it means by “early stage.” Are we talking only local cancers, and not regional ones? If so, then 99% is indeed the 5-year survival rate–but in breast cancer land, we usually we use “early stage” to refer to non-metastatic cancer, so the term includes both local (stage 1) and regional (stage 2 and 3) cancers. For stage 2, the 5-year survival rate is 93%, and for stage 3 it’s 72%. There’s a crapload of data like this available on the American Cancer Society’s website. Komen would be wise to review it.

Next up: here’s one from their website. They also hand this bad boy out at conferences for metastatic patients. There is so much here that needs unpacking, I don’t even know where to start. Maybe with the pie chart.

So, see the part where it says “early detection”? Yeah, that’s not research on metastasis. The definition of “early detection” is finding breast cancer before it has metastasized. Komen continues to perpetuate the theory that early detection saves lives, but the evidence shows that it does not. We’re detecting a lot more early stage cancers than we were 20 years ago, but the incidence of metastatic breast cancer has remained stable since 1975. So, that 10% of the funding pie that goes towards “early detection” is not for metastatic disease–it’s neither treating metastatic patients, nor preventing metastatic breast cancer.

I’d also put that $147 million dollar figure in the “misleading” category. It’s not false, but what they don’t say is that the $147 million dollars is over the entire lifespan of the Komen organization, all 33 years of it. If you look at the 2014 version of this document, you’ll see that the number is $133 million. $147 million sounds way more exciting than $14 million per year out of an organization that spends $278 million per year. I believe the choice to use a cumulative figure is deliberately misleading. Which makes it a lie.

Speaking of the 2014 version, see how it says that up to 40% of metastatic patients will survive 5 years? That’s false. The 5-year survival rate for stage 4 patients is 25.9%. I suppse we should give kudos to Komen for removing that lie from the 2015 version. So, thanks Komen, for lying one less time.

So, why is Komen lying? My guess–and it’s just my guess, but it IS an educated one–is that they believe that marketing hope is more lucrative than marketing reality. They think that they need to look like they’ve accomplished something with all the billions they’ve spent, or else people will stop donating. But the real problems Komen faces going forward can’t be cured by a marketing strategy. They’ll be fixed by honestly and humbly looking at the reality of breast cancer today–and then doing the work that needs to be done now, not the work that needed to be done 30 years ago. Lying to us, and to themselves, is not going to help Komen achieve its mission of ending breast cancer. 

How being a young metster is like having AIDS in 1984

Posted on by Beth Caldwell

I recently finished the audiobook of And The Band Played On (because chemo brain makes it hard for me to read a whole book, so I’ve turned to audiobooks). I took notes frequently as I was listening, because I kept being struck by how similar the experience of being a young woman with metastatic breast cancer is to the experience of having AIDS early on in the crisis. Here’s my list of similarities.

1. You have a lot of friends who die. Like, way more than someone of your age group should have. During the early years of the AIDS crisis, the gay community in particular was forced to watch many of its brightest young lights put out far too soon. It’s the same for us metsters. One that hit me especially hard this year was Seporah Raizer, whose writing for Huffington Post was so powerful and so honest. There’s this layer of sadness that comes with being part of a community so profoundly associated with death.

2. Despite watching all these friends die, you see nothing of your experience reflected on the evening news. Nobody seemed to think gay men’s deaths were a crisis in 1984, except for other gay men and a handful of doctors. There was very little on the news about AIDS in those days. And there’s very little news on metastatic breast cancer. There’s a lot of hopeful stories about people “beating” breast cancer, and we just don’t fit that narrative, so they leave us out.

3. Every ache and pain and weird symptom of any kind is cause for alarm, and you’re not really paranoid for worrying. Because that headache actually COULD be a sign that you’re dying. 

4. The research community seems laser-focused on preventing your disease rather than treating the people who already have it. When AIDS was first being studied, there was a tremendous focus on the epidemiology of HIV, as one would expect when one is discussing a virus. Containing the spread of the virus was important to saving lives. But what often got lost in the focus on preventing the spread of HIV was saving the lives of the people who already had it. It was extremely difficult to get the research funding necessary to develop drugs to treat patients with HIV/AIDS.  And it’s much the same for people with metastatic breast cancer. There’s so much focus on earlier detection of breast cancer, but once your breast cancer has metastasized, there’s a sense among too many in the medical community that your case is hopeless and thus not particularly interesting. I myself had an appointment with a doctor who I could tell 30 seconds into the appointment didn’t care about me, and I felt like it was because she knew my cancer is terminal. The man who discovered AZT once said, “If you declare the patient terminal and don’t do anything to treat him, he’ll always die.” This is how a terminal diagnosis becomes a self-fulfilling prophecy. 

5. People tell those at risk of the disease not to worry their pretty little heads. Especially early in the AIDS crisis, there were a lot of folks who didn’t want to scare the gay community or people with hemophilia and thus discouraged the policy makers from taking steps that would have saved lives. We don’t warn people with early stage breast cancer that their cancer could metastasize years or even decades later, no matter what stage their cancer was at initial diagnosis, because we don’t want to scare them. Both of these reflect a paternistic attitude towards patients and those at risk of disease that I find particularly insulting, as well as harmful to the cause of saving lives.

6. Only by demanding that researchers save our lives will we have a shot at living a full lifespan. All the ribbons in the world won’t do it, be they red or pink. What will do it is turning the good feeling that those ribbons represent into research funding. With AIDS, it took celebrity faces like Elizabeth Taylor and direct action by ACT UP. MBC hasn’t found its celebrity yet, but at least we have MET UP now. (Any celebrities want to help us out?)

Add your comparisons between MBC and AIDS in the comments!

ACTION ALERT ALL CAPS FREAK OUT

Posted on by Beth Caldwell

You guys! I spent the last 3 days on Capitol Hill meeting with Congressional staffers to discuss improving the world of metastatic breast cancer, particularly with respect to research. It turns out that the Senate is currently, like, literally as I’m typing this, working on legislation on cancer research and if we act fast to ask them to including things in that legislation, it really could get in there. I’m not kidding you guys, this is the most excited I’ve been about our chances to change the world of breast cancer research since I got diagnosed with this shitty disease. 

Which means I really really really really need your help, not next week or whatever but right this minute, today, no later than this weekend. I need you to cut and paste what I’ve written below and send it to the Senators who are on the Health, Education, Labor and Pensions Committee. Don’t worry, here’s their website so you don’t even have to look it up:

http://www.help.senate.gov/about/members

And here’s the text of what I’d like you to send them. NOTE: if you don’t have metastatic breast cancer yourself, just tweak the letter a little and then send it.

To the Members of the Senate Health, Education, Labor and Pensions Committee:

I am living with metastatic breast cancer, and I am writing to you to request that you include important reforms for patients with metastatic breast cancer in the bill your committee is currently drafting on medical research funding. As described below, these reforms would dramatically improve the lives of American women and men living with metastatic breast cancer.

As you may know, metastatic breast cancer is breast cancer that has spread from the breast to other parts of the body, and it is currently incurable. Everyone with metastatic breast cancer will die of or with our disease. Although about 5% of women with metastatic breast cancer are lucky enough to live with their disease for a decade or more, all the while enduring the torturous treatments that keep them alive, the median lifespan from diagnosis with metastatic breast cancer is only 2-3 years, and the 5-year survival rate is only 22%. 40,000 women and men die of metastatic breast cancer every year in the United States alone, and this figure has not changed meaningfully in decades. 

Unfortunately, the odds of a cure being found in my now-limited lifespan are very low, because so little of breast cancer research funding goes towards metastatic disease, despite the reality that nearly all breast cancer deaths are from metastasis. A study last year by the Metastatic Breast Cancer Alliance found that only about 7% of breast cancer research dollars go towards metastatic research. After decades of the war on cancer, we still don’t know how metastasis happens, let alone how to prevent metastasis or how to treat it once it has already happened.

This is why I’m asking you to include the following provisions in the legislation you are currently drafting:

1. Require the federal government to spend at least 30% of its breast cancer research funding on metastatic disease, rather than early stage breast cancer. I believe that 7% of research dollars going towards the only type of breast cancer that is terminal is not enough.  Transferring research dollars from early stage to metastatic breast cancer would be revenue-neutral and would ensure that researchers have adequate resources to turn metastatic breast cancer from a death sentence to a life sentence.

2. Ensure that the National Cancer Institute’s Surveillance, Epidemiology and End Results (SEER) Program begins tracking when patients with early stage breast cancer develop metastatic disease. Currently, we don’t know how many people who have early stage breast cancer will develop metastatic disease because the SEER program does not include this datapoint. Only 6-10% of newly diagnosed patients have metastatic disease at diagnosis; the rest of the metastatic community is not counted in the database. Adding this information to the SEER program would ensure that researchers will have the basic epidemiological information they need to direct their research towards the most pressing needs.

3. Reform compassionate use access to drugs under development. Patients with a terminal diagnosis may not have time to wait for drugs to be approved, and are willing to take more risks on a drug still in trials because they literally have nothing to lose. They shouldn’t have to navigate the byzantine process now in place for patients seeking compassionate use access to drugs that might prolong their lives dramatically. Additionally, it can be difficult for patients to gain access o these drugs through the clinical trial process because of the restrictive eligibility requirements of many clinical trials, and because of geographical limitations on access to clinical trials.

4. Require insurers to treat oral and intravenous chemotherapy drugs the same. Under many insurance plans, patients must pay enormous copays for chemotherapy given as a pill, whereas IV chemotherapy is considered a hospital service and does not come with a similar copay. The costs of these copays can run into the thousands of dollars and are prohibitively expensive. Doctors and patients shouldn’t be incentivized to choose IV chemotherapy over oral chemotherapy that often comes with less side effects simply because of insurance rules. Many states have already enacted similar legislation, and it’s time that there was a rule providing for parity between oral and IV chemotherapy at the federal level. Senator Kirk has drafted legislation on this issue and I believe it should be incorporated into your committee’s bill.

5. Reform Medicare rules that incentivize older treatments over newer ones. Under existing Medicare rules, doctors are penalized for using newer, often more effective treatments and rewarded for using older, less effective ones. For metastatic patients, many of whom are on Medicare because of their terminal diagnosis, suffering through months of an ineffective older treatment before gaining access to a newer one could be the difference between life and death. Senator Kirk has drafted legislation on this issue and I believe it should be incorporated into your committee’s bill. 

At the height of the AIDS crisis, 40,000 Americans died every year, the same as the number of Americans who have died every year of metastatic breast cancer since the 1970’s. It was Congress’s leadership during the AIDS crisis that made federal health agencies take the disease seriously and turned AIDS from a death sentence into a life sentence. I hope that you will consider showing that same leadership with respect to metastatic breast cancer, so that I can live a full life span as well.

Sincerely,

Your Name Here

__________________

Thank you SO MUCH to all of you who take the five minutes of your time to do this! And please spread the word around your social networks to encourage others to do the same!

How Komen Must Change to Get My Support, Part 3

Posted on by Beth Caldwell

Alright you guys, here’s my third concern with how Komen operates that they’d need to change in order to get my support. I’m going to go with a metaphor on this one that will probably piss a lot of people off, but honestly, it’s how I feel when I see Komen pinkwashing carcinogenic products.

I live in a neighborhood in Seattle that’s near a major street called Aurora. If you’ve never been to Seattle or aren’t familiar with our city’s layout, Seattle is a long narrow city that’s wedged between Puget Sound (ocean water) on the west, and Lake Washington on the east. Aurora is one of the major north-south routes through the city, and was in fact the major highway for the city before Interstate 5 was constructed. You may have heard recently about a horrible accident that happend on the Aurora Bridge, which passes over the ship canal that connects Lake Washington with Puget Sound.

Like a lot of those old highways around America, it had a lot of roadside motels along it that turned, well, pretty skeevy after the interstates were built. Think rent-by-the-hour places, or in today’s era, rent by the week if you’re a pimp and you need a place for your prostitutes to turn tricks. And so the place where you pick up a cheap prostitute in Seattle is along Aurora-prostitutes who will take money from anyone, no matter how dirty.

You see where I’m going with this. Komen is the Aurora prostitute of the breast cancer world, because they’ll take money from anyone, no matter how dirty it is. Are you a fracking company putting known carcinogens into your fracking wells? Don’t worry, just paint your drill bits pink and make a donation to Komen and everyone will think you’re helping cure breast cancer. Did you get sued for allegedly putting carcinogens in your fried chicken, and now need a PR boost? Sell your artery-clogging food in pink buckets and claim you support women’s health.

There are some who will say, “Who cares? All the money is going to a good cause, so who cares where it comes from?” Well, first, I’d direct you back to Part 2 of this series about the way Komen spends its dirty money in completely unhelpful ways, and second, I care. I care when an organization that claims to be trying to end breast cancer goes around enabling the companies that are putting cancer-causing chemicals into our environment. I can’t support an organization that engages in such blatant hypocrisy.

I hope Komen will rethink who it partners with, and how its actions are harming women rather helping them. Because when you lay down with dogs, you’re bound to get fleas. Or syphilis. 

How Komen Must Change to Get My Support, Part 2

Posted on by Beth Caldwell

Here I go again. I want to say that I appreciate the comments made so far, both agreeing and disagreeing with me. You’ve helped me to really hone my arguments about why I don’t support Komen. You know, I have a friend who said she was harassed, to the point of having to call the police, by Komen supporters after she said negative things about Komen. So far, nobody’s stalking me, thank goodness…or at least not that I know of. It’ll be easy enough to find me on October 13 at 11:00 on the west lawn of the US Capitol if you ARE stalking me! 

Now it’s time to talk about Komen’s funding of research. This will be long and a little complicated, but try to hang in with me, because this is important. 

A lot of folks don’t understand how Komen is organized and how their funding and expenditures work, so let’s talk a bit about it, shall we? Komen is run kind of like McDonalds. The local chapters of Komen are a lot like franchisees, the way a person who owns a local Mickey D’s is a franchisee. The locals run the local events and put money into the local community, the way a McDonalds franchisee runs their own store and hires their own staff. But the locals have to send 25% of the money they raise to the national organization, the way your local McDonald’s store makes money for the McDonalds corporation. 

Now, the locals do a lot of good in their local communities. They pay for mammograms and help people get to treatment and stuff like that. And that’s good. But what they almost never do is fund research, which is the only thing that’s going to turn a metastatic diagnosis from a death sentence to a life sentence. The reason they don’t is that you need a scientific review committee to review grant proposals to decide where the research dollars should go, and the national organization has that committee. Which means this: of the dollars raised in Komen’s name through local events, it’s pretty much just the 25% of those dollars that are even eligible to go towards research. Now, once that 25% goes to the national, it’s combined with what the national itself is able to fundraise. They get big donations from corporations, and they have income from investments.

So, how much of the total money raised by the locals and nationsals goes to research, which is the only thing that will save my life? Well, according to Komen’s most recent audited financial statement, all of Komen, both national and local, spent $305 million in the fiscal year ending March 2014. $43 million of that total went to research. That’s 14% of their total expenditures. In comparison, Komen spent almost three times that amount on “public health education.” And they spent $17 million more on administrative costs than they did on research.

Now, some folks commented on my last post with a link to the Snopes article about Komen, noting that it says people who complain about Komen’s lack of research funding just misunderstand Komen’s mission, and that most health organizations like Komen don’t have research as a focus. But I’d argue that it’s not that we don’t understand this reality–it’s that we want that reality to change. I believe that an organization that says its goal is to end breast cancer should be spending its money to do just that. And the only way to end breast cancer, including breast cancer deaths, is through research.

Which brings me back to what Komen would need to change to get my support: I want to see that 14% figure raised to at least 50%. This would require Komen to change the ratio of funding that locals send to the national, or to start requiring the locals to form scientific advisory committees so they can begin funding research in their communities, or to do what I think it should do: focus more of its existing national funding on research. 

I personally don’t have a problem with Komen spending money on treatment and other direct patient support, but the amount Komen spends on “education” that is focused on raising awareness of breast cancer is something that I believe could be better spent on research. Teaching women to get mammograms has barely made a dent in the death rate for breast cancer, but research has the potential to save lives. My life. My friends’ lives. I also believe the expense involved in many of their fundraising events is too high, and Komen should work to decrease those costs, so that money can be redirected to research. Until the balance between research and education is dramatically changed, I am unable to support Komen.

As always, I welcome your comments. And please stay tuned for Part 3!