CDC Symptom Diary Card

Sunday, September 30, 2012

She said, "This is mom" after I handed her the card

Yesterday was a big day for us in the Teal Four Square Flash Mob community.  With the Facebook campaign falling on deaf ears I needed to do something else to help raise awareness of ovarian cancer.  That is how this whole Four Square Flash Mob thing started.  I imagined a crowd of people dressed in beautiful teal, crossing an intersection over and over, calling out about our "gems" and giving people symptom cards.  I am a nut, I know.  A little much and, well, different.  Let's just say that I am strangely happy that it wasn't a mob in downtown Seattle yesterday, but  instead just me and my little basket of cards, talking one on one with other women.

As I was leaving my apartment yesterday I still had not chosen my location. With all of my sales and marketing history (not professional that is) I would say I failed miserably in terms of planning.  Oh well.   But, that may have also been a good thing.  I hadn't done anything like this in a very very long time.  I am a shy person and for me to go out and talk to strangers is challenging.  Always has been.

So I got in my car and just started driving.  The air was cool, a little cloudy, and really I had no clue what was happening anywhere.  I thought, well I can go to Pikes Market, that would be crowded.  Then I thought, maybe by South Lake Union, so beautiful around the lake, surely I will find lots of people there.  Then I thought about Phinney Ridge, a little neighborhood with lots of shops.  Then Fremont, then Golden Gardens park by the sound.  I thought about Greenlake too, a little lake between Phinney and Wallingford.

So first I drove to Phinney Ridge and it didn't feel "right".  I kept sensing this need to go to Greenlake, so that's where I went.

On the west side of the lake I could see the regular view, people walking and running along the edge, as usual.  I decided that I should go to the eastern side of the lake, where the food stand and boat rentals are,  an area more concentrated with people. If you have ever driven anywhere in Seattle you know that you can't really see what's around the corner.  That's how it is driving around the lake, crazy.

As I drove around towards the eastern side and passed the tennis courts suddenly there appeared an area with a bunch of tents and balloons.  I saw a huge stage and thought, wow, just exactly the place to be. Perfection.

It took forever for me to find a place to park.  Finallly I found a little spot with 45 minute parking in front of Jodee's Desserts.  Yum.  I scurried my buns to the park, teal balloons and basket in hand, ready to talk to the world about ovarian cancer.

When I got there, I saw that the event was for the Light the Night Walk, It's a walk to benefit the Leukemia and Lymphoma Society. People were lined up to register, red and gold balloons were everywhere and you could see people forming their teams.  It was just a really nice event.  

I got permission from the people at the information booth, who were "in charge".  I want to say thank you so much for allowing me to hand out my cards at this special event. It felt really good to give out the cards because somewhere along the line, they will help.  I met some really nice people.

One woman stands out.  She and her sister were with their children, babies and older children.  She took the card and read it quickly.  She glanced at her sister and said "This is mom".  She asked for another one, and handed it to her sister.  My heart sank.  I gave her a sympathetic downward smile.  She did not ask questions and I knew I should keep walking, but then after a few feet of walking, one of her children grabbed me and said his mom wanted another card.  I knew that card was for grandma.  

I am so relieved that they have a little information.  That one little card may be the spurt of courage that is needed to be firmer with her doctor to at least look for ovarian cancer, in the hopes to rule it out.

I will never forget those words and the look on her face.  Imagine being at an event and being handed an ovarian cancer awareness card, sort of a shocker really.  Not something you would ever think to get, to be honest.

I write about this not to pat myself on the back or anything, because none of this is up to me.  I am just trying to do my part to give back.

Whether it's a national PSA or flash mob of one, we can all do a little something to help people be more aware of the whispers of ovarian cancer.

My friend Bob went out in his little town in Texas to do the same.  He distributed 100 cards and spoke with many women about ovarian cancer.  I have another friend who gave her pharmacy a bunch of cards.

So I leave you all with a few more little photos from yesterday.  I love you all and thank you for following along with me on my cancer journey.  God Bless you.


PS.....the dessert place is fantastic!!home/mainPage  (Fabulous gluten free and dairy free desserts, yum)

PS again....Please visit Cancer Lifeline and view their incredible services.  They fell short of their goals this month and their unique services help all people dealing with cancer and their caregivers.  They have helped me so much.

Saturday, September 29, 2012

Round Table with WEGO Health: our interview

It was such a pleasure and honor to speak with two other teal sisters and discuss increasing the awareness of ovarian cancer via social media.  WEGO Health is an organization that works to empower health activists.  Thank you!

WEGO Health Portal - empowering Health Activist

Round table Recap: Ovarian Cancer

by Amanda
We had an incredible Round table last Friday in honor of Ovarian Cancer Awareness Month. While other cancers seem to get the spotlight – the symptoms of ovarian cancer are often mistaken for other things and misdiagnosis is common. As a woman I found the information absolutely invaluable. I’m so glad we got to know these three Health Activists – they are doing amazing things for the Ovarian Cancer and women’s health communities.  –Amanda

Roundtable Recap: Ovarian Cancer

by Marissa Herman

WEGO Health likes to highlight (and learn) about health conditions that aren’t necessarily as well known as others. We love to bring awareness and information to others who may be able to use the info to help themselves or those in their community. In last Friday’s roundtable we focused on Ovarian Cancer. We found three lovely women who are also trying to spread the word about Ovarian cancer,Carolyn(@karenecpaceocf), Connie (@conniescheel), and Denise (@servivorgirl). These three amazing women shared their stories and their helpful advice about early detection, advocating for yourself, and facts about Ovarian Cancer.

Connecting to the online community is a great way to meet others that share your passion for Health Activism and let you know you are not alone on this journey.  Social media has become a huge tool in connecting with others in your community.

How has social media and the online community changed your personal health journey?

Carolyn: By just making me wiser. I found out about the CA 125 blood test online. Going online has helped me be wiser about the things I need to watch out for.
Connie: I thought it was important that other people knew that at 32 you can be diagnosed with Ovarian Cancer and here’s what it’s like to go through it. I wanted to teach people this is how you cope with it and it isn’t a death sentence. Social media has just been the link to the world. I mean that’s the loudest voice available to us right now. Facebook, twitter, with social media you can reach a lot of people and through them it starts a chain reaction.
Denise: For me, I started it originally because I needed someone to talk to, I know that sounds kind of strange. I started seeing, because I became a member of Facebook and Twitter, I started getting more and more support. I started seeing that this is a really valuable resource to reach other women, and men, people and health care providers to maybe hear my story. Maybe it will change even one doctor, yes one medical provider learn a little bit more, pay a little more attention, anything to reach more people in his or her office, anything to reach more people so it is incredibly valuable.

Unfortunately, behind every lesser known illness there are bound to  be myths and misconceptions.

Carolyn : One of the main myths is that there is a certain age that get Ovarian Cancer and that is certainly not true. Like a lot of older people get it or mostly people that get Ovarian Cancer who have never had children, which is a myth.
Connie: A myth that touched me very personally was your weight. I think there’s a misconception that if you’re healthy and eat well and you’re thin, then you are immune to ovarian cancer, or all cancer.  And that’s not true. Just like if you drink and smoke and do all those things that you will get cancer. There are no guarantees either way.  I also think women more than men have been trained to just go with whatever your doctors say. You have to be your own best advocate, you have to be your own loudest voice because no one will fight for you like you will.
Denise: I would definitely have to agree about the age and health for sure, because I was told I was too young to have ovarian cancer 3 times. I don’t think we have enough about ovarian cancer to say what is and what’s not true about ovarian cancer. When it comes to ovarian cancer there is just so much we don’t know, the best thing we can do is know our bodies and listen to our bodies and read about it.

Not many people know about Ovarian Cancer.  What would you like to share with other Health Activists about it?

Carolyn: It’s affecting more and more women now. I have never heard of Ovarian Cancer when my sister was diagnosed. And how many women are like me? There are a lot of people that have no idea about Ovarian Cancer.
Connie: I think the most important thing is that ovarian cancer looks so much like so many other disease and I think people aren’t recognizing it as Ovarian Cancer. And we don’t want to scare people, but we want to encourage women to go to the doctor and rule out that they Ovarian Cancer. It may or may not be but people should rule it out as soon as possible.
Denise: Join other kinds of forums because one of the things is that our circle is very passionate about ovarian cancer because of how it sneaks up on us. I think that if Activists reach out in other communities and become a part of the group they can learn about Ovarian Cancer in that way. And I would encourage people to share each other’s organizations, promote each other, that’s important.

Ways other Health Activists help the Ovarian Cancer community

Carolyn: Use the internet. There are a lot of people out there, a lot of organizations including the one’s we are part of that are trying to be an advocate for Ovarian Cancer. So, definitely use the internet and volunteer. There are a number of organizations all around, Washington, Florida, Tennessee, that they can be a part of. Put the word out there, they should know the symptoms of Ovarian Cancers.
Connie: I agree with Carolyn, getting online, going to your local support groups and cancer centers and asking “what can I do?” There’s a great opportunity if you have Facebook, Twitter, to just start posting things and sharing things from websites. There is tons of great information available that we need to get circulating on an individual level.
Denise: Definitely reaching out on the internet and just searching for national and local organizations. I also like to reach out personally with the local organizations the one on one. Find your comfort zone; there are many ways you can help, many, many ways.

Programs, tools, information, or resources would you like to see created especially for those dealing with Ovarian Cancer

Carolyn:  I am not a survivor but I am a caregiver. There was nothing for caregivers of Ovarian Cancer. If there was more for the caregivers and tools for the caregivers, that would be helpful.  Something that could show this is what you do for this and this is what you can do for that.
Connie:  I agree, more support for the caregivers. I think, in a way, Ovarian Cancer patients and caregivers feel a little ostracized. I would like to see a change. An app to help organize your notes from your doctor and prescriptions would be nice. The biggest thing for me is a way to get complementary therapies to people. It should be more known for woman that there are other ways to heal and to cope.
Denise: I would like to re-emphasize that feeling of being ostracized. I needed resources, I needed help, I needed all sorts of things because my life was turned upside down. An education series, a video series of basic gynecological health to talk about what if it’s Ovarian Cancer and what are questions to ask when you get your surgery.  Such a simple, basic thing, but on a video you see a face, you see a real person talking about it. It would be easier to absorb it because it’s so scary.

What tips or advice do you have for someone who is just getting started in advocating and has decided to write a blog about their own fitness or healthy living journey?

Carolyn:  Know their bodies and know if something different is going on in their bodies.
Connie: Listen to your bodies, pay attention to yourself, value yourself, value your health, and find your peace.
Denise: To learn more about your family history and maybe keep a journal about how your cycles are an things like that. I think we’re taught to dismiss stuff, so maybe keep a journal of unusual things.
I would like to thank Carolyn, Connie, and Denise for talking with us. It was really interesting to learn all of the stigmas and gain new knowledge about this growing illness. They each shared valuable insight and great tips. Even though they each have a different story, they all share the need to spread the word about Ovarian Cancer.

Wednesday, September 26, 2012

Five-Cent Diabetes Pill From 1958 May Be New Cancer Drug: Health Jason Gale and Andrea Gerlin, ©2012 Bloomberg News Published 7:40 a.m., Wednesday, September 26, 2012

Five-Cent Diabetes Pill From 1958 May Be New Cancer Drug: Health

Published 7:40 a.m., Wednesday, September 26, 2012
Sept. 26 (Bloomberg) -- The next new treatment for breast, colon and prostate cancers, among others, may be a diabetes drug first approved in 1958.
Metformin, the most commonly used medicine to lower blood- sugar, is the subject of about 50 cancer studies globally, according to U.S. government clinical trial information compiled by Bloomberg. The research began after scientists found metformin prevented tumors in mice and that diabetics were less likely to develop a malignancy if they were taking the 5 cents- a-day pill than other diabetes medications.
The medicine is dispensed about 120 million times annually, according to a 2010 report in the journal Molecular Cancer Therapeutics. If the latest trials on breast and other tumors are successful, the drug could become a cheap weapon in the fight against a myriad of diseases including pancreatic and ovarian cancers. All told, cancer kills one in eight people and is the second-leading cause of death in most developed countries.
“The hope is that if it does show safety and efficacy, it would be available in a cost-effective way,” said Chandini Portteus, vice president of research, evaluation and scientific programs at Susan G. Komen for the Cure, a Dallas-based breast cancer advocacy group. “It would be wonderful for patients if we had something that we knew worked and was safe and low- cost.”
The organization has spent about $10 million investigating metformin for breast cancer, Portteus said. “We have to turn over every single rock to determine what the options are for patients who need them.”

Millions of Deaths

Global cancer deaths will climb to 13.1 million by 2030 from 7.6 million in 2008, the Geneva-based World Health Organization said in February. Cancer costs totaled $124.6 billion in the U.S. alone in 2010, according to the National Cancer Institute. Newer, more targeted drug therapies, such as Dendreon Corp.’s $93,000-a-year Provenge for prostate cancer, may add only a few months of life.
Metformin was the seventh most-dispensed medicine in the U.S. in 2011, according to a list published by IMS Institute for Healthcare Informatics in April that ranked a group of painkillers that includes Vicodin as the most-prescribed. A pack of 84 500-milligram tablets of the diabetes pill, taken twice daily, costs the U.K.’s National Health Service 1.37 pounds, or the equivalent of about 3 pence (5 U.S. cents) a day.
The MD Anderson Cancer Center in Houston is studying metformin in at least eight trials, according to a National Institutes of Health online database.

‘Safe and Cheap’

“It is safe and it is cheap,” said Donghui Li, an epidemiologist and professor of medicine at the center. “It reduces the risk and has better survival” in studies she’s done in pancreatic cancer patients.
Patients who had taken metformin had a 60 percent lower risk of developing pancreatic cancer, according to a case- control study Li published in 2009 in which she compared cancer patients taking metformin against people not on metformin.
Metformin didn’t benefit patients whose pancreatic cancer had already spread to other tissues, Li reported this year in the journal Clinical Cancer Research. Those patients whose malignancies were confined to the pancreas survived longer if they were on metformin -- an average of 15 months, or four months more than patients not taking the drug, she found.
More research is needed to confirm those benefits in patients as their disease is developing, Li said.
“I got a lot of calls from patients and other clinicians, but I told them I cannot give them a recommendation,” she said.

Lack of Funding

Further studies have been hampered by a lack of funding, Li said. Large-scale trials can cost tens of millions of dollars. Metformin, which Bristol-Myers Squibb Co. sold in the U.S. as Glucophage, lost patent protection years ago, meaning that manufacturers no longer reap significant profits from its sale.
Pamela Goodwin, an oncologist at Toronto’s Mount Sinai Hospital, is leading a trial in 3,582 breast-cancer patients at 300 locations. Data analysis from the five-year study may start in 2016 or 2017, according to Goodwin, who said she was ready to start on the research a decade ago, but lacked financial support from companies, including one that still had a patented version. She declined to identify the company.
“When they realized the results wouldn’t be available until they lost their patent, they pulled out,” said Goodwin, whose $25 million study is supported by the Canadian and U.S. governments as well as not-for-profit groups including the Canadian Cancer Society, the Breast Cancer Research Foundation and Cancer Research UK. Apotex Inc., a Toronto-based maker of generic medicines, is supplying metformin and a placebo used in the trial.

French Lilac

“All of the evidence has just become stronger while we waited,” said Goodwin, who is also a professor of medicine at the University of Toronto.
Metformin is a synthetic form of a compound found in French lilac, used as an herbal remedy for frequent urination in the Middle Ages. Inside cells, it acts like a weak poison. Mitochondria, the power source in cells, are tricked into thinking the body is exercising and needs to draw more nutrients and energy from the blood, according to Dario Alessi, a biochemist at the University of Dundee who studies how messages are transmitted within cells.
Registering low energy levels, cells turn off the inappropriate division that is a hallmark of cancer, he said. By lowering blood-glucose levels and sensitizing cells to the effects of insulin, metformin may help control levels of the hormone, which is implicated in cell division and cancer.

‘Very Open-Minded’

Alessi and colleagues suspected that if cancer cells were treated with metformin, they would be tricked into thinking they don’t have enough energy to divide and grow. He petitioned diabetes epidemiologist Andrew Morris to search a database of users of metformin and other diabetes drugs for their cancer incidence to test the theory.
“Me, being very open-minded, said, ‘but we’ve been using it for diabetes for 50 years and that’s all it does,” said Morris, now the University of Dundee’s dean of medicine and Scotland’s chief scientist. He and colleagues conducted two epidemiological studies based on observational data.
“We showed that those who hadn’t developed cancer had a greater tendency to have been prescribed metformin,” Morris said in an interview.
The results showed 20 percent fewer cases of cancer among diabetics taking metformin, Alessi said. “The nice thing is that this has been replicated by at least 10 other studies now with larger patient numbers in other parts of the world.”
Researchers are pooling the data to discern the cancer types metformin may be most protective against, Morris said.
When Alessi and colleagues gave metformin to tumor-prone mice, they found the drug delayed the emergence of growths by 30 percent to 40 percent, he said. In that way, metformin could be used to stop cancer cells before they develop into tumors.

--Editors: Kristen Hallam, Rick Schine

To contact the reporters on this story: Jason Gale in Melbourne at; Andrea Gerlin in London at

To contact the editors responsible for this story: Jason Gale at; Phil Serafino at

Read more:

Monday, September 24, 2012

In loving memory of Heidi, from their blog

When You Both Have Cancer: I Will Always Love You Heidi - Farewell: Heidi Hendricks Heidi departed for Heaven this morning.   I will always love her.   Thank you for the prayers and positive tho...

My deepest sympathies to Joe and their families.  Heidi is loved by many, including me.  Rest in Peace sweet Heidi.

Positive Results Blog: National HBOC Week

Positive Results Blog: National HBOC Week: National HBOC week starts today.  As I mentioned in my Ms. Magazine blog post about HBOC week,  most people don't yet know about Here...

Friday, September 21, 2012

New Approach to Optimal Debulking

Ovarian Cancer is a cancer that attacks the entire abdominal cavity, when advanced.  This video exemplifies the need for primary care doctors and gynecologists, as well as other specialists, to better work together when it comes to caring for their patients.

Here he speaks about how they consult with and utilize the surgeons who specialize in areas of the upper abdomen to improve chances of progression free survival.  Very interesting to hear.

I find it fascinating that our medical system is compartmentalized in such a way that an individual can have 5 or 6 specialists looking at the exact same region in the body.  Especially when it comes to the pelvic and abdominal area of our bodies.

The PCPs are more crucial than ever before because they are the ones who need to assimilate this information and see the bigger picture.

My word of advice today is make sure you have a really good PCP.  If nothing else, find one who is older and interested in research, not settled.

If my PCP had put the little pieces of my puzzle together, maybe my outcome would have been better.

Tuesday, September 18, 2012

Chants for the Curious and "Strong Like You", a song for the Brave

Here is your chant for today!

"Outsmart Ovarian Cancer Together" 
by Denise Archuleta, September 17, 2012

Know your bodies
Know your bodies

You are a woman

Hear the whispers
Hear the whispers

Your gems, your ovaries

Your gems cry out loud

The cancer is the cloud

Hidden within you
Hidden within you

They cry and scream softly

So quiet
So quiet

Hear the whispers
Hear the whispers

You know somethings wrong
You know somethings wrong

Never ignore it
Never ignore it

Your gems cry out loud

The cancer is the cloud

You feel it, You know it
You feel it, You know it

Feel the whispers
Feel the whispers

Don't linger, don't wait
Don't linger, don't wait

It hides while it bleeds you
It hides while it steals you

Be Brave, Be strong

Ask your questions now

Don't wait too long

We are survivors
Your teachers, Your mentors

Your gems cry out loud

The cancer is the cloud

Outsmart       Ovarian        Cancer      Together!

Here is your song for today!  "Strong Like You"
"Strong Like You" 

I am sharing this moment with you again, because the song written for my mom, by Kathie Lee Gifford and David Friedman. It speaks for all of us who need strength.  It is precious.  I love you mom.

We were on the KLGandHoda 4th Hour of Today in May of 2012.  My mom was honored!

I am so grateful for this and we will never forget.  Thank you Kathie Lee and Hoda, and David, Chandra and Davy!

I just wanted to play this again because it makes people smile.


Sunday, September 16, 2012

Yes on TEST Act (H.R. 6272) Clinical Trial Reform

 Please support H.R. 6272

By Roxanne Cousins

September is National Ovarian Cancer Awareness Month!!! This is a month dedicated to raising awareness, money, hope, and telling the cold hard truth about what we who are fighting this disease are up against. I am an ovarian cancer survivor who was diagnosed Stage IIIC in May 2010. I was just shy of 38 at diagnosis, married to a wonderful husband with whom I had a 10 year old son and not in the least bit prepared for a cancer diagnosis! After about 7 months of a remission, I had a recurrence and recently finished treatment but am probably looking at a long line of continued chemotherapy ahead of me, if I'm lucky. Since it is widely stated, even among some oncologists, that there has been no change in the death rate with regard to ovarian cancer in over 30 years, I am looking at a fairly uncertain future even though I am only 40 years old. Despite all this, I do feel that I have a positive attitude. I believe that there is a cure and that it will be found but I also feel that the current system is going to make that pretty difficult business. 

Like many cancer patients, researching the latest clinical trials and possible treatment options is something I do every day. What I have suspected and what I am beginning to understand to be a certainty now is that there are drugs out there that have been proven to help cancer survivors yet are not getting FDA approval and, despite positive results in clinical trials, the drugs become unavailable. Let me repeat: Good drugs that have been shown to be effective in fighting ovarian cancer are purposely made unavailable. 

Recently, I was in the running for a vaccine trial (KLH + OPT-821) in Oklahoma City and met a wonderful gyn/onc there. She was mentioning to me how I may, at some point, want to look into a PARP trial (a class of drugs that has gotten a lot of positive reviews within gynecological oncology. She went on to say that she felt Olaparib (one specific PARP) was a very good drug, probably better than Veliparib (a newer one that has come out and is in trials), and that some people had great responses etc. but that it did not get FDA approval and now is going to be very difficult to get. She said it would likely start showing up in Europe in trials there and then maybe someday they'd bring it back over here. 

I did go ahead and ask my local oncologist if he could get it off label and it was confirmed that no, since it is not FDA approved, they can't get it for me and while there are a few trials still out there on it I guess after they're closed, that will be it. 

A fellow survivor I am in touch with recently told me that she was able to get the PARP drug Olaparib through a clinical trial some time ago. She said that the oncologist at this site, who is heavily involved in clinical trials, told her that the problem was with "drug company economics" and, while the drug worked well for ovarian cancer patients and in a number of breast cancer patients with a particular type of mutation, further trials by the pharmaceutical companies to see if it would work with a larger group of breast cancer patients didn't go as well. According to this oncologist, the "universe" of those patients who could benefit wasn't as large as they would have liked, and therefore not worth their time so it was essentially dropped. There is another drug called Farletuzumab that worked very well for some ovarian cancer survivors - I believe it has met with the same fate. Successful in trials, yet unavailable. There are other I can only wonder about.

One major problem that is glaringly obvious in its need to be fixed is the opaque nature of the clinical trial system. This broken system ensures that information needed by the public as well as researchers and others who are looking for a cure is not open for sharing, nor is it added to the general base of existing knowledge for a particular disease. This is the opposite of what should be happening and what most people think is happening with information gleaned from clinical trials. In trials that have already been completed on the government website where trials are registered, the "Results" tab is almost always blank, and one has to ask around, talk to people in the know, and put things together. The Transparency for Clinical Trials Act (or the TEST Act, H.R. 6272), was recently introduced in Congress by Rep Ed Markey (D-MA) and addresses this issue of purposely-withheld information by drug companies but, sadly, is projected to have only a 3% chance of passing. This will not solve everything, but it’ll be a heck of a lot harder for drug companies to deny patients of drugs that are showing positive results, in black and white for all the world to see. 
Additionally, Donald Light and Joel Lexchin point out that:

"Taxpayers pay for most research costs, and many clinical trials as well. In 2000, for example, industry spent 18% of its $13 billion for R&D on basic research, or $2.3 billion in gross costs (National Science Foundation 2003). All of that money was subsidized by taxpayers through deductions and tax credits. Taxpayers also paid for all $18 billion in NIH funds, as well as for R&D funds in the Department of Defense and other public budgets. Most of that money went for basic research to discover breakthrough drugs, and public money also supports more than 5000 clinical trials (Bassand, Martin, Ryden et al. 2002). Taxpayer contributions are similar in more recent years, only larger."

So the public subsidizes these trials, but it is with the implicit understanding that the pharmaceutical industry is diligently working toward a cure, learning new information through research, and adding that new information to the existing body of knowledge, NOT hoarding information and choosing what to do with the data based on monetary factors alone. So, after all the time and expense involved in these clinical trials, a drug that was extremely promising and had many successes with ovarian cancer as well as some breast cancer patients is now essentially unavailable. I do not feel I am hyperbolizing when I say this is outrageous, on many levels. The women who have participated in these trials (unless it is through the NIH) get to and from the trial site on their own dime and it is often very expensive; even the cost of transportation for these valuable trial subjects is not absorbed by the pharmaceutical companies. The tacit understanding of these women (many of them desperate and in end stages) is that even if the trial will not help them, they are giving of themselves to help advance the body of knowledge that exists and hopefully what is learned will lead to a cure for their fellow survivors. The current way of doing business is a slap in the face to these women, and a breach (I feel sure) of their understanding of what might be done with the information gathered, which is to use it only in a way that benefits the company.

Why in the world is a drug that has been effective for so many go through trials and then end up becoming not available? I feel quite sure that the story of Olaparib is not unusual, as it seems that this is the way the business model is set up. Drug companies' use of countless human guinea pigs and taxpayer dollars to find successful treatments for cancer or other diseases should not be allowed to make these drugs unavailable; this is patently unethical. 

With 1 out of 3 women and 1 out of 2 men facing a diagnosis of cancer at some time in their lives, these are issues we should all be aware of. We owe it to ourselves and those we love to get involved and spread the word about what is going on. The issues laid out here do not apply to only women with ovarian cancer, but to anyone who is affected by cancer or who simply cares about the cause. Now is the time to pledge to break down barriers - and I’m talking about ANYTHING that gets in the way – to The Cure! We cannot allow ourselves to sit back comfortably as women continue to die while treatments are being withheld and pharmaceutical companies continue with business as usual. A survivor friend did some research on the history of the FDA and found that the biggest changes occurred when there was public outcry, so if that’s what it takes…

This September, let’s do more than wear our Teal t-shirts and ribbons. Let’s demand more than what we are currently given, and let’s channel the loving and generous sentiment that characterize the people of this nation, and encourage them to support us where it really matters and demand change. Let’s no longer allow the false narrative that pharmaceutical companies are doing all they can and as fast at they can to find cures as that is precisely what is perpetuating the system. 

Write your Congressmen and women and simply demand that they support cancer patients by voting for the TEST Act (H.R. 6272) to reform the clinical trial system, and to use their legislative power to push for more information sharing, more innovative research, and more access to potentially helpful drugs that have already been identified. You can find your representative using the following link:

Also, please call or write OCNA at 

and ask them to not only support the TEST Act, but to make us aware of these types of issues in the future and work toward breaking any and all barriers that prevent us from access to treatments that we desperately need! 

Here’s to progress and to people power!!


Light, D., J. Lexchin. 2004. Will Lower Drug Prices Jeopardize Drug Research? A Policy Fact Sheet. The American Journal of Bioethics 4(1):W1-W4.