Plea from a cancer survivor and scientist to save the ACA and science funding
My name is Kiran Dhillon and I live in Seattle, WA (98102). I am writing to ask you to help save the Affordable Care Act and to strongly support increased funding for scientific research.
In March 2015, I was diagnosed with breast cancer. The news was devastating but I powered through surgery, chemotherapy and radiation. I even met you at a fundraiser for you in West Seattle soon after I had lost my hair to chemotherapy. At the time, I was a scientist at the Fred Hutch, studying chemotherapy resistance in breast and ovarian cancers of all things. I had excellent insurance and acquired only a few thousand dollars in debt from medical bills. Now as I wait for my 2 year mammogram on March 10, I find myself filled with an enormous amount of anxiety. My cancer was found early so the prognosis is very good but I still can’t help being nervous before the big test. This time around, the prospect of repeal of the Affordable Care Act has added another dimension to the anxiety. I have insurance now but if I ever had a recurrence, would I be denied coverage due to preexisting conditions if President Trump and Republicans had their way with the repeal of the ACA? This thought terrifies me. Would I have to make decisions based on my financial ability instead of my medical needs? Would I become a burden for my family?
As a scientist and someone who now promotes scientific research as the Director of Scientific Programs for the Rivkin Center for Ovarian Cancer, I’m also alarmed at the prospect of reduced funding for scientific research. Men and women who are currently battling or have survived the horrible ordeal of cancer are depending on scientists across the nation to continue to work hard until we have a cure for these deadly diseases.
The United States has been the leader of research and innovation since the time of Benjamin Franklin—a tradition that continues today. I believe there are (at least) two major factors that have contributed to our success and both are under threat with the new administration. First, we invest more at the federal level on research and development than any other country. Second, our immigrant past and present ensure a diversity of ideas and approaches that are required to solve difficult scientific, medical and engineering challenges. The policies and tweets of the current White House administration threaten both federal funding for research and development and immigration and diversity. We will surely not remain leaders in innovation and research if these trends continue.
Senator, we need you and your colleagues in both the Senate and the House to fight for us. Fight for cancer survivors like me. Fight for the ACA. Fight for science. Fight for immigrants. We also promise to do our part. As you have seen we have organized ourselves. You and your colleagues will hear from us. We will provide you the public support you need to help defend our freedoms and rights to equality, healthcare and a healthy environment. Fight for America.
I appreciate your help and ask that you please send me a response with a commitment to protecting the ACA and funding for research. Thank you for your time and considering my request.
I’m excited to announce that the first Hutch United Predoctoral and Postdoctoral Fellowships have been awarded to Vasundhara Sridharan and Dr. Athea Vichas! The Fellowship is the result of efforts by a large team of dedicated volunteers, the Fred Hutch Development team and senior Fred Hutch Leadership. The awards signify a very important step towards increasing scientific diversity at the Fred Hutch.
Read more about the awardees in the Fred Hutch News Service piece written by Bill Briggs:
Two years ago, four of us – founders of Hutch United – started work on a dream project to develop and acquire funding for fellowships that would fund scientists from backgrounds typically underrepresented in science to bolster their chances of success in their chosen path and, in turn, increase diversity in the scientific pool. We wanted this to be an inclusive fellowship that would support traditionally underrepresented , women, LGBTQ and international scientists. Due to the efforts of a large team of Hutch United members and support from Fred Hutch Development and Fred Hutch CEO Gary Gilliland, the dream has finally become a reality! We’re proud to announce two fellowships, each for $100,000/year, that will support 1 postdoc/medical scientist and 1 graduate student for two years each. Funds can be used for salary/stipend, tuition (grad students), benefits, conference travel and research. The first round of Hutch United Fellows are expected to be announced this summer.
Here’s a piece I co-wrote with my colleague Kathy Briant on the disparities in survival from breast cancer. Next week, Hutch United hosts two Diversity Seminars that will include discussion on efforts of cancer research centers to decrease such disparities. The post was originally posted on the Hutch United Blog.
The color of your skin may impact your risk as well as your prognosis for breast and other types of cancers. It sounds absurd, but it is true. For example, last year, a study published by the Sinai Urban Health Institute and the Avon Foundation for women reported that black women are 40% more likely to die from breast cancer than are white women, even though mortality rates from the disease are decreasing overall. In some cities in the US, they’re up to 70% more likely to die. What’s worse is that this disparity in mortality is growing in a majority of the cities analyzed.
Disparities in cancer incidence and mortality rates are not a new phenomenon and they exist for a number of reasons—and the problem isn’t exclusive among black women. In fact, regardless of race or ethnicity, disparities are often seen among people of low socioeconomic status and people who live in areas with limited or no access to effective health care (e.g. Native American women living on Indian reservations and Hispanic women living in rural Yakima Valley). These medically underserved populations tend to suffer from a disproportionate burden of cancer when compared to the general population (NCI Center to Reduce Cancer Health Disparities).
Why does such disparity in breast cancer mortality exist?
Reports from Avon and the Fred Hutch highlight some of the underlying socio-economic and biological causes of this disparity. Differences in both access and the quality of cancer screenings may explain some of the disparity. Medically underserved women may have less access to “cutting edge” screening technologies. Additionally, there may be differences in both the access and quality of cancer treatment for them because they may seek treatment at local hospitals as opposed to cancer centers that not only offer treatment, but conduct research and can offer access to novel therapies. Further, distrust of the healthcare system due to historical injustices may keep black and other minority women away from traditional sources of healthcare for longer, which delays diagnosis and treatment and negatively impacts survival.
It’s also possible that genetic differences, however slight, may also contribute to differences in survival. For example, higher obesity rates known to occur among black and Hispanic women may place them at higher risk for breast cancer. It’s important to note however that this doesn’t explain differences in treatment once a diagnosis has been made. Another reason for worse outcomes is that black and Hispanic women tend to get a more aggressive, and less treatable, type of breast cancer.
Increasing trust and removing barriers to access
Dr. Beti Thompson, Director of the Health Disparities Research Center at Fred Hutch offers some solutions to reduce the existing disparities. One much needed solution is ‘connecting with the community’ and building trust. Historical abuses, such as the Tuskegee syphilis study, continue to have repercussions in the present day. These types of cases laid the foundation for distrust and fear of the medical establishment by minority populations.
In addition to building trust, Dr. Thompson and others suggest education to dispel cancer myths and empower community members to make informed decisions about cancer prevention and screening. Equally important is increasing access to screening by offering appointments outside of normal business hours for the working class, bringing mobile mammography units to communities with limited access, or partnering with the Breast, Cervical and Colorectal Cancer Early Detection Program to offer low-cost or no-cost mammograms for those who are uninsured or underinsured. In addition to lowering screening costs, bringing screenings to communities can result in increasing access to early diagnosis for even the most isolated communities.
Addressing the critical need for increased participation of minorities in clinical trials
Though major advances have been made to understand the genetic basis and treatment of breast and other kinds of cancers, most of these studies have been conducted in white women (and men). It is critical to understand if findings from these studies are broadly applicable to patients across all ethnic groups. There has been a push in recent years to expand studies to other minority populations but progress has been slow.
Recruitment of minorities in clinical trials still lags due to a number of issues including recruitment problems and fear among patients due to past abuses discussed above. Perhaps recruitment can be improved by developing culturally relevant communication tools that are tailored for communities. Minority community members may not be aware of the importance of participating in trials—treatment may benefit them individually, but it also helps advance research to develop cutting edge therapies.
Additionally, different tools or approaches may be needed for the recruitment of patients of different ethnicities. An increase in the diversity among the clinicians and other caregivers who are attempting to serve patients from different communities may ameliorate the recruitment and trust issues. This paired with more cultural training for non-minority clinicians may decrease potential biases that interfere with recruitment of minority patients in clinical trials.
As scientists and clinicians, we help provide solutions to the myriad of health problems that plague humanity. However, it is also imperative that we strive to bring equitable access to those solutions among people from different socio-economic and cultural walks of life. The problems are grand and the solutions are not simple. Building trust has to occur at the level of the community and that is slow work, but we can do it.
Kiran Dhillon is a postdoctoral scientist working to identify mechanisms of chemotherapy resistance in BRCA-associated breast and ovarian cancers at Fred Hutch. In addition to being a breast cancer researcher, Kiran is also a recent breast cancer survivor. She is a founding member of Hutch United and a member of the Fred Hutch Diversity Council.
Katherine (Kathy) Briant is a bilingual (English/Spanish) and bicultural community health educator with the National Cancer Institute’s (NCI) National Outreach Network. She works with Dr. Beti Thompson of the Health Disparities Research Center at Fred Hutch using a community-based participatory research approach to implement and evaluate community interventions that address issues around health disparities. Kathy is also a member of the Fred Hutch Diversity Council.
From Left to Right: Dr. Matthias Stephan, Dr. Denise Galloway, Dr. Fred Appelbaum, Dr. Kathi Malone, and Dr. Kiran Dhillon
September 2015 marks the 40th Anniversary of the Fred Hutchinson Cancer Research Center (Fred Hutch). How has science and the environment in which it’s conducted changed over the last 40 years. I recently got invited to take part in a conversation with some very talented scientists at the Fred Hutch to reflect on these questions. Here‘s a link to excerpts of the conversation that were published in the 40th Anniversary edition of Quest Magazine.
Lack of hispanics, blacks and other minorities in the sciences is a well-documented problem. What is at the root of this problem? At what level of training or education should the solutions be targeted at? These are some of the questions individuals working in this area grapple with constantly. Here is an interesting piece from the Huffington Post that discusses the problem and possible solutions at the level of higher education.
As a side note, we’re excited to host Dr. Maggie Werner-Washburne, one of the contributors to this piece, in February 2015 for a seminar for Hutch United, a group committed to fostering diversity in science at Fred Hutch.
The Institute for Systems Biology in Seattle held a conference this week that focused on systems biology and cancer. Experts from all over the country were brought together to share their work on how biological and clinical data derived from a single patient or big data derived from thousands of patients can be analyzed, integrated and, ultimately, used to treat that patient or others like him or her. The technological developments of the past decade and half allow us to generate large amounts of data from any given individual. These data include the individual’s genetic sequence, the levels of different genes being expressed in their cells, and other clinically relevant information. A big challenge for physicians is how to bring the benefits from these technological advances into the clinic to benefit patients.
During the conference, Dr. Tony Blau, a physician scientist from the University of Washington, described how having access to large amounts of data has changed what ‘doing the best we can’ for a patient means since he first started treating cancer. He urged that it is time to bridge the enormous the gap between the rate of growth of current technological advancements and the rate at which these advancements are making it to the clinic. He discussed some of his own efforts toward this goal in a TEDx talk earlier this year. Check it out for yourself!
Diversity in the sciences is a topic that is close to my heart and something I keep coming back to over and over. It’s not something we strive for just in the sciences but probably all work places. I’ve always taken it as a given that diversity is a good thing without feeling the need to justify it. But, why is diversity so important in the workplace?
What diversity means to me
For me, diversity refers to cultivation and celebration of ideas from and individuals from different ethnic, national, social, economic, political, physical, mental and sexual (orientation and identification) backgrounds and ways of thinking. Yeah, it’s a cumbersome definition but it’s inclusive, just like the word it defines. And notice, I didn’t write ‘tolerance.’ For me, true diversity means respecting and celebrating differences, not just tolerating them.
Getting back to why diversity is important
An obvious reason is that cultivating a diverse work force allows ‘equal’ opportunity for folks from different backgrounds, some of which come with challenges that can be roadblocks to success. But I think the strongest argument for diversity is that we ALL benefit from working in an environment with people from diverse backgrounds, ideas and experiences. Working with folks with different experiences, different sets of assumptions and approaches to problems not only has the potential to lead to more creative solutions but also forces us to challenge our own assumptions and ideas.
Lack of diversity in the sciences is a problem
Despite the potential benefits, the sciences still struggle to be sufficiently diverse. We have a really nice representation of international scientists (which is great!). However, there’s a glaring and well-documented under-representation of African-Americans, Native Americans, Mexican-Americans, mainland Puerto Ricans and Pacific Islanders across academic and research institutions nationally. The problem gets worse the higher you go up the ladder, from undergrads, grad students, postdocs, faculty, and all the way up to higher administration. The reasons behind this are complex-involving circumstances that have basis in history, economics, social and racial conditions and politics-and we won’t explore them here.
What we can explore here are some possible solutions. Through a series of posts I’ll conveniently call ‘The Diversity Series’, I’ll explore different solutions some of us are implementing locally to foster diversity. The next post in the series will be ‘Sharing Our Stories.’
I was blown away by this 5 minute speech by high school student Riyanka Ganguly. In an Ignite Seattle speech entitled ‘I Like Pink But That Does Not Mean I Can’t Think,’ Riyanka beautifully challenges stereotypes and preconceived notions that young girls (and grown women) encounter as barriers to their success–especially those of us interested in science. Riyanka is an unapologetic go-getter. She started a chapter of Young Women in Bio at her high school and I can’t wait to see all the places she’ll go!