The Importance of Seed Money

I used to wonder just how beneficial our small grants are. Does a $40,000 grant really make a difference? According to big-name researchers like Patricia Steeg, PhD, and Danny Welch, PhD, yes, it does!

Researchers have told me time and time again that it is extremely difficult to get seed money to fund new ideas. Organizations that give large sums of money for research expect a reasonable chance that the research will be successful, and thus, tend to fund studies that explore ideas for which data has already been collected. Therefore, in order to show that an idea has merit, you must have some data. And you need data to get money. So, how do you generate data with no money?

It is a real problem for researchers who have great new ideas and no way to test them. That’s why these small grants are so valuable. A $40,000 grant will allow a researcher to devote part of every work week to a specific, METAvivor approved and funded project that could be the next great breakthrough. The rest of his/her time can be spent working on those big dollar projects that keep the lab afloat. If the idea has merit, this small grant will allow the researcher to produce enough data to go after the big bucks – even the holy grail of funding – the NIH R01 grant.

Traditionally, researchers have squirreled away funds from one project to initiate another related project and generate preliminary data for the innovative/high risk studies. However, the NIH budget has dropped a whopping 1.8 billion dollars in 2013 (a five percent decrease from 2012). Exacerbating the situation is the fact that much of the remaining funds are already promised to multi-year R01 grant awardees from 2010. This leaves very few funds for smaller grants meant to encourage innovative and high-risk/high-reward ideas. It is no wonder then that a small organization such as METAvivor has seen a dramatic increase in number and quality of applications.

Small grants like those given by METAvivor are not only a welcome relief to researchers, they also have provided a great opportunity for our organization to shape the research funding landscape. While scientific pursuit is embarked with noble intentions, the realities of keeping the lab running and securing tenure often force the researcher to “follow the money.” If funds are available only for prevention research, then prevention is what scientists will study. A lean funding environment, however, puts an organization like ours on par with bigger funding agencies and helps us direct the focus (and funds) toward the more important and innovative scientific queries. When funding for NIH is restored in the coming years (fingers and toes crossed!!), our awardees will have the preliminary data and competitive edge to win larger grants to further metastatic breast cancer research.

As our organization has grown, we have been able to expand our grants to include an optional second year of funding. If the results of the first year of work are promising, we offer funding for a second year with a path forward to the R01 style application. We are hoping that all four of our 2013 recipients are successful and able to achieve a second year of funding. With your help, we will also be able to fund four (or more!) additional new projects next year.

We will be announcing this year’s winning grant proposals soon. I want to take this opportunity to thank our scientific review board, who volunteered a great many hours reviewing this year’s applications. The review process is very rigorous and time consuming, and we appreciate their help. I also want to thank our Director of Research, Dr. Arti Santhanam, who has donated countless hours setting up our grant program, and processing all of our applications. She has done the work of ten people in the last two months, while starting a business and raising her young daughter.

~~ Kelly Lange


You may read about our research grant program here.

You may read about our previous grant winners here.

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Where Are the Numbers?

METAvivor is claiming not just Oct 13th for recognition of metastatic breast cancer; we are claiming 30% of the month, 10 days instead of one, to let our voices be heard! This is the third post in our series.


In Search of Facts for Metastatic Breast Cancer
by CJ (Dian) Corneliussen-James

I’ve been living with metastatic/stage IV breast cancer (MBC) for seven years. During that time it has become abundantly clear that the facts associated with MBC are not only rare and hard to find, but that they are often not corroborated and/or not current and/or misquoted and/or illogically used. Often, MBC facts are just plain non-existent. So this year for Metastatic Breast Cancer Awareness Day x 10 Day 3, I am asking those who actually collect the data .. or could collect the data … or should collect the data… or who are tasked with reporting the data… to do what is necessary to bring clarity and accuracy to metastatic breast cancer statistics, starting with the five topics below.

1. How many people are diagnosed annually with MBC?

I used to occasionally see the number diagnosed annually as being 49,000. Recently the number has been harder to find. So I called the American Cancer Society (ACS), the National Cancer Institute (NCI), Surveillance, Epidemiology and End Results (SEER) and the Centers for Disease Control (CDC). I said I was looking for the total number diagnosed each year including all those that progressed to stage IV in a given year plus the number of persons who presented at stage IV in their initial diagnosis. Each organization genuinely tried to assist, but after searching their records, each concluded that the number diagnosed in a given year is not collected … at least not at the national level.

One organization suggested individual states might collect the number, but the few states I checked did not, which meant that even if the others did, no accurate national count could be derived through those means. The one statistic I obtained during those phone calls was the number of those who initially presented at stage IV in a given year. That figure was 5% (about 10,000) women. They had no statistic for men initially presenting at stage IV. As to the count of 49,000, it is my understanding it was a count for breast cancer patients progressing to stage IV each year. Therefore, the total number of women diagnosed annually with MBC is about 59,000
(49,000 + 10,000). NOTE: This is only one estimate. Another estimate is contained in the section below titled “How many are currently living with MBC?”

Would it not be much easier and far more accurate to simply require medical facilities to enter every patient’s MBC diagnosis (male and female, progressive and initially diagnosed) into the national database? If this were done, we would have accurate, non-ambiguous numbers that would be instantly available. If we did this, an easy data search would yield not only the correct number being diagnosed, but also the correct number currently living with MBC, the number of years a patient survived with the disease, and other invaluable data. Since this is not being done, questions persist, such as the following.

2. Where are the men?

Why do we almost never hear of the men? Over 2,000 men are diagnosed annually with breast cancer and over 400 are reported to die annually of the disease. (Keep in mind that we don’t really have any valid numbers at our disposal, but I’m using what I have.) You have probably seen the number of predicted deaths for this year shown in numerous writings as 39,620. But that’s only part of the story. Year after year when the number appears on the American Cancer Society’s website is says: “In 20XX, approximately 39,XXX women are expected to die from breast cancer.” Did you notice the word “women” at the end? Many people never notice it. And when the number is repeated, that critical word is almost always dropped so that all you read is that there will be 39,XXX deaths from the disease in 2013. This incorrectly implies that 39,XXX is the total number of deaths.

METAvivor has consistently stated we are losing over 40,000 Americans each year to MBC. We are … as far as the predictions can tell us. If you read the full American Cancer Society report each you’ll find: “In 20XX, about 2,XXX men will be diagnosed with breast cancer and 4XX men will die from the disease.” For 2013 it is 410 men bringing the prediction up to 40,030. The total prediction has never gone below 40,000. And even a prediction should be accurate to the extent possible.

The overall death count is not the only count from which the men are missing. I called around. One organization told me the male community was considered too small a sub-group to be considered “significant” for factual reporting … as though the men dying of this disease did not have enough challenges to face … and as though we were actually getting factual reporting. No one with this disease is insignificant and no one deserves to be left out of the count.

3. How many are currently living with MBC?

Occasionally we read that “150,000″ (no gender designated) are living with metastatic breast cancer. Recently, a few people have been using 155,000 or even 160,000. The original number may have come from the 2006 Living Beyond Breast Cancer publication, Silent Voices (Musa Mayer, M.S., M.F.A. and Susan E. Grober, Ph.D.). Based on data collected in 2005, it carries the quote on page 8 that: “…at any given time, a low estimate of 150,000 and a more reasonable estimate of 250,000 American women are facing the ongoing challenges of living with metastatic (breast) disease.” Silent Voices also includes the estimate that “every year between 73,000 and 86,000 American women discover they have metastatic breast cancer.” Please note that this is the combined total of those who progress to stage IV and those who initially present at stage IV.

If Silent Voices is indeed the source of the “150,000″ number, it is not clear why the “low estimate of 150,000″ has been the number continually repeated rather than the “more reasonable estimate of 250,000″. Even more perplexing is why the number remains static year after year. As seen in the previous section, the number of persons diagnosed annually with MBC may be as low as 49,000. The more likely number is 59,000 and could be as high as 73,000 to 86,000 (Silent Voices). Even using the low number of 49,000, the metastatic breast cancer community is still growing by 9,000 people each year (49,000 diagnoses minus an estimated 40,000 annual deaths = 9,000 net gain). Thus if the size of the MBC community in 2005 ranged from 150,000 to 250,000 and it is now eight years later; and if we have had a net gain of 9,000 per year for 8 years; then we have increased by 72,000. This makes the current size of our community anywhere from 222,000 (150,000 + 72,000) to 322,000 (250,000 + 72,000).

If the numbers in Silent Voices were more accurate and 73,000 to 86,000 (no gender designated) are being diagnosed every year. Then we are growing by at least 33,000 (73,000 – 40,000) per year or as much as or as much as 46,000 (86,000 – 40,000) each year. This would give our community a size range of anywhere from 414,000 (33,000 x 8 + 150,000) to 618,000 (46,000 x 8 + 250,000).

One final note on the number 150,000: Some of the very organizations that state we are living longer and longer are the same organizations that report our overall count year after year as 150,000. The count can only remain at 150,000 if for each new diagnosis, there is a corresponding death. They may wish to have it both ways, but they cannot. Regardless of which MBC diagnosis count you use, the number 150,000 is clearly wrong.

4. How many patients survive 5 years?

When I was diagnosed I was told I had a five percent chance of being alive in 5 years. So I was delighted when I found a statistic online suggesting that on average, my odds might actually be 20%. Shortly thereafter a visiting nurse told me it was 27%. More recently I’ve seen estimates ranging from 23.4% (SEER) to 15% (American Cancer Society) to less than 10% (Eastern Cooperative Oncology Group in conjunction with Northwestern University Medical School). It seems no one has a good handle on the five year statistic, likely because the information is simply not collected. The one statistic that has remained fairly constant is the median survival. For some time now that has ranged from 18-24 months to 19-30 months. Not very encouraging.

5. How many Americans die annually of MBC?

Originally I used the numbers on the American Cancer Society website. But I questioned these because in addition to numbers from previous years, they listed the number of people diagnosed and succumbing to the disease in the current year. It was clear that no one could know those numbers in advance. So I checked. The ACS told me those numbers are only predictions. So once the final numbers are in, are the previous “estimates” corrected? No.

I asked where I could obtain accurate numbers. They referred me to SEER data. On the SEER website I found everything listed in terms of age-adjusted incident rates per 100,000 people. I learned that age-adjusted numbers are derived at using the following formula:
This was totally out of my league, but they gave a definition. “An age-adjusted rate is a weighted average of the age-specific (crude) rates, where the weights are the proportions of persons in the corresponding age groups of a standard population.”

Okay … still not clear; however, using this formula, SEER had arrived at the following for the most recent set of years (2005-2009) for which statistics have been calculated for breast cancer: Approximately 0.0% died under age 20; 0.9% between 20 and 34; 5.6% between 35 and 44; 14.8% between 45 and 54; 21.4% between 55 and 64; 19.9% between 65 and 74; 22.0% between 75 and 84; and 15.5% 85+ years of age. In total this was 23.0 per 100,000 women per year.

As best as I can understand it, these percentages reflect a race, gender and age calculation for a geographic area that is somehow representative of the US population so that they can judge the odds that I, a person between the ages of 55 and 64, will die of breast cancer.

Ok … I just want simple numbers … ones I can grasp … ones I can understand. Clearly the numbers exist or the calculations could not be made. And clearly the complicated formulas are not understood by a significant number of people visiting the source … the SEER website. So on a website clearly meant for the public, why don’t we find numbers that the public, on the whole, can understand? I called. I asked. They said I couldn’t have the numbers. There was no clear explanation as to why.

FINAL POINTS

To all those with MBC: I do not wish to depress you with this article, but rather to encourage you to advocate for better data collection with more clarity, accuracy and attention to detail in reporting.

To those who collect, tabulate, analyze and report the data. It is my fervent hope that you will move to collect exact numbers that will be reported in an accurate, straight-forward and inclusive manner. Perhaps in your minds it is all the same breast cancer whether it is stage 0, I, II, III or IV. It is not. There is nothing like a lifetime of treatment and non-stop medical appointments with the overarching, constant threat of death to make you realize that you live in a completely different world than the pre-metastatic community.

The MBC community is growing; it is gaining a stronger voice every year and it is very determined. Statistics or no statistics, the community is pushing the MBC agenda forward. It would, however, be an enormous help to be able to do this with complete and accurate statistics.

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An Open Letter to Breast Cancer Researchers: Are You Building Stairways to Nowhere?

October 13th is Metastatic Breast Cancer Awareness Day (MBCAD) — one day for the roughly 40,000 Americans dying each year of the disease. One day for the estimated 73,000 – 86,000 diagnosed annually with our disease. One day for the unknown number of Americans living at any given time with our disease.

We deserve more. Much more. We are 30% of the breast cancer population and we deserve 30% of breast cancer research funding; we deserve 30% of breast cancer support activities; we deserve 30% of Breast Cancer Awareness Month (BCAM). Thus METAvivor is claiming not just Oct 13th for recognition of metastatic breast cancer; we are claiming 30% of the month, 10 days instead of one, to let our voices be heard!

With her kind permission, we are publishing Sandra Spivey’s excellent post, titled as above, originally posted on her blog, Cats and Cancer, on October 11, 2013. Thank you, Sandi.


Are you building stairways to nowhere?

Dear Scientific Researcher,

What you do is extremely important and provides hope to those like me living with metastatic breast cancer. The projects you choose, and the collaborations and advances you make, can be vital to ending the set of diseases known as breast cancer, thereby saving thousands of lives in the future.

I have met many of you on various review panels and have sat in the room with you, discussing the strengths and weaknesses of proposed breast cancer studies. You bring in scientific viewpoints; I bring in the views of the community, particularly the views of the patient advocate. Sometimes you get wrapped up in the elegance of a specific study and shift uneasily in your seats when I ask: “So how does this study help us save lives or prevent the disease from happening in the first place?”

I realize how difficult it is to obtain funding for your labs and that some of you have had to dismiss some talented members of your teams due to lack of funding. I have raised over $50,000 for breast cancer research and have lobbied dozens of times on Capitol Hill to secure your research dollars. I feel your pain.

I have attended far too many funerals cloaked in pink ribbons. Inspiring women, creative women, and yes, demanding women and men have suffered and died at the hands of this disease. Each day, those who call themselves survivors, live with dark clouds over their heads housing thunderbolts of lingering fears that recurrence and death is in the forecast.

When I read funding proposals, it makes me aware how little you really know about curing breast cancer in humans. You don’t know how many breast cancers start, how to accurately detect breast cancers, why mutations happen, why the immune system ignores these aberrant cells, how cancer cells can survive throughout the body and colonize in new locations, or how some cancer cells resist treatment. Sure, you know some, but not enough.

We have spent billions of dollars on breast cancer research, from both the public and private sectors. You have written thousands of peer-reviewed journal articles on the subject. You have attended and presented at hundreds of breast cancer symposia, costing millions of dollars and thousands of hours.

Securing study funding, publishing papers and presenting findings seems to have become an end unto itself for some of you. Finding real cures for real people appears to have been lost in the shuffle.

You study signaling pathways that end up worthless as targets for treatments due to the body’s ability to create redundant systems. You study different dose levels of the same thirty-year-old chemotherapy treatments on lab mice and proudly boast that the new combination extends life a few months. You repeat unsuccessful research studies because prior scientists failed to produce their findings. You plunge into nanoparticle technology to find the right shape to fit into cell receptors in order to develop a toxic payload into cancer cells, and discover the keys can’t find the locks. You study the neighborhood around cancer and try to figure out if that’s what fosters new cancer formation. You spend years discovering new cellular mechanisms, write about them, and then look for your next project.

All of this: Yet people keep dying. At least one has died from breast cancer as you read this letter.

But are you building stairways to nowhere?

What happens after you publish your findings? When you finish a project what happens next? How are your results applied to get us any closer to actual treatments or prevention? How do you hold yourselves accountable to clinicians, patients and the general public? How can you make it less about “publish or perish” and more about saving lives? How can you make sure you ask the right questions before starting any new project instead of building a stairway leading to nowhere?

Are you satisfied with your own progress? How would you feel if someone undergoing treatment looks over your shoulder as you work? Would you personally go to your friends and family, asking them to donate to the work you are doing right now? If your own loved-one was diagnosed with breast cancer, what steps would you take to make sure they would not perish from the disease?

These are important things to think about. I know you work hard. I work hard at staying alive. Both jobs are difficult.

What I’m asking you to do is to consider your role in the fight to end breast cancer. Are you winning or losing? What can you personally do to ask the right research questions that are not redundant or merely interesting, but are important to finally putting an end to breast cancer? How can you make sure that your research makes a real difference and foster translation into the clinic?

I’m fighting the battle every day. Please do what you can to fight with me. Put an end to building stairways to nowhere.

Sincerely,

Sandra Spivey


Sandra Spivey is a retired human resource professional residing in California who spends her time volunteering at the local animal shelter, serving as a consumer reviewer for breast cancer research proposals and mentoring those with metastatic breast cancer. Living with stage IV cancer since 1998, she shares her insights riding the roller coaster world of a survivor at Cats & Cancer.

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Metastatic Breast Cancer Awareness — Making Every Dollar Count

Today is Metastatic Breast Cancer Awareness Day (MBCAD) … one day for the roughly 40,000 of us dying each year of the disease. One day for the estimated 73,000 – 86,000 diagnosed annually with our disease. One day for the unknown number of Americans living at any given time with our disease.

We deserve more. Much more. We are 30% of the breast cancer population and we deserve 30% of breast cancer research funding; we deserve 30% of breast cancer support activities; we deserve 30% of Breast Cancer Awareness Month (BCAM). Thus METAvivor is claiming not just Oct 13th for recognition of metastatic breast cancer; we are claiming 30% of the month. We are claiming Oct 13th – Oct 22nd … 10 days instead of one.

Stay tuned to this page for new information coming out every day for the next ten days. Let our voices be heard!


Making Every Dollar Count:
When $320,000 can do as much as $30,000,000
by CJ Corneliussen-James

NOTE: I have used footnotes to add sources and explain in more detail a number of statements that were distracting in the article but I felt should be included. I encourage you to read them.

This year METAvivor will award $320,000 in metastatic breast cancer research grants. How much in donations and fundraiser proceeds did it take to do this? Just $320,000. Many organizations would need over $30,000,000 to achieve the same thing. We don’t. Here’s why.

When I look at other cancer organization online I always look for their financial information. There I find little charts dividing their budgets into a host of categories including research. In most cases, this is how your donated dollar is used. It is divided up to help fund each category on the chart. It’s quite justifiable. But research is often greatly underfunded and the percentage of the research going to stage IV cancer is miniscule.

Of the few pieces of information I’ve found over the years, there was a 2004 report stating the National Cancer Institute was spending less than one-half of 1% of its $5 billion annual cancer fund on stage IV canceri. Then there was a 2007 roundup of that estimate to “less than 1%” of research funds going to metastasis research(ii). Finally a 2010 study reported a 5% stage IV research average(iii) for the western world, ranging from 11.6% (Switzerland) to 2.3% (US).(iv)

I began doing some calculations and they were shocking. I shared them a few weeks ago with friend and he said: “You must put that out there for people to understand. It has certainly changed my mind about where to donate.” So here it is.

Most organizations put far less than 50% of their revenue into research. I’ve seen well known and highly respected cancer organizations put as little as 10% of their revenue into research. For the sake of this paper, I’ll go with 30%. Of that 30% that goes into research, the average amount going into stage IV research appears to be about 2.3%, but I’ll use a more generous 3.5%. So here’s what we have.

Company X has $30,000,000 in revenue. It puts 30% ($9,000,000) into research. Out of that it puts 3.5% ($315,000) into stage IV research. Yet all METAvivor needs is $320,000 in donations and fundraiser proceeds to do in excess of that! And don’t forget that if the organization is not a breast cancer organization, only about 60% of the $315,000 ($189,000) goes into MBC research.

METAvivor puts 100% of every donation and 100% of fundraiser proceeds into its metastatic breast cancer research grants.(v) As to our operations and activities, we do only what we can get funded through scholarships, sponsorships and grants received. If we don’t receive enough, we don’t make it to a conference or we don’t print as many fliers, or we continue to store inventory in our basements and our cars (hoping for a better alternative in 2014). But our donation/fundraiser fund is untouchable except for research grants.

METAvivor has another advantage. We are all volunteers, working out of our homes(vi) and off personal equipment. Not only our lives, but the lives of tens of thousands of people we care deeply about are at stake. We have a passion and dedication born of our illness that keeps us pressing forward regardless of the challenges we face. We refuse to get caught up in nonsense or superficiality as they can only be a distraction. And we are determined to achieve our ultimate goal of drastically increasing MBC research and ultimately saving lives.

With your help, we will succeed.


i Why We’re Losing the War on Cancer [and How to Win It]. Clifton Leaf, Fortune Magazine, 2004.

ii CNN LIVE EVENT/SPECIAL, Sanjay Gupta Special: Saving Your Life, Aired January 13, 2007 – 20:00.

iii Cancer Metastasis as a Therapeutic Target. Patricia Steeg, PhD and Jonathan Sleeman, European Journal of Cancer. Volume 46 Issue 7, pg 1177-1180, May.

iv Metastatic breast cancer research is a term that is now also used for research to “prevent” MBC and for research to discover the steps in a progression to MBC. There is no longer any unique term devoted to research focused exclusively on finding solutions for the already metastasized breast cancer patient. METAvivor solely funds research devoted to the latter. But given the overlap in terminology, what one person may call metastasis research is not necessarily anything that will help the stage IV community. And that skews the statistics.

v Proceeds from third-party fundraisers are considered donations by METAvivor and thus 100% of those proceeds have always gone toward our research grants. Proceeds from METAvivor’s own “local” fundraisers were initially divided with 90% going into our research grants and 10% being used for administrative purposes to help keep us afloat. Fortunately, that is no longer necessary and 100% of all local fundraiser proceeds are now also going into our research grants. NOTE: About a year ago we entered a local, short duration fundraiser contest. Any proceeds earned had to be used locally, which excluded research. We entered using a completely different fundraising portal and widely advertised that any proceeds through that portal would go toward a gazebo erected in honor of all persons with stage IV cancer. About $200 in local donations were collected and each donor specified the donation was for the gazebo. We regret that this action caused concern on the part of a few supporters. We learned a valuable lesson. Rest assured that 100% of your donations will indeed go into our MBC research grants.

vi The Chesapeake Life Center has very generously rented us an office for $1 per year that one person can use two days per week.

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