How being a young metster is like having AIDS in 1984

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!


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:

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.


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

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

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!