2013 National Minority Cancer Awareness Week, April 15th-21st

Next week in the United States is designated as National Minority Cancer Awareness Week. While cancer affects men and women of every age, race, ethnic background, and economic class, the disease has a disproportionately severe impact on minorities and the economically disadvantaged. National Minority Cancer Awareness Week promotes increased awareness of prevention and treatment among those segments of the populations that are at greater risk of developing cancer. The week’s emphasis gives clinicians, healthcare professionals, and researchers an opportunity to focus on high-risk populations and to develop creative approaches to battling cancer problems unique to these communities.

The Centers for Disease Control and Prevention (CDC) report that cancer death rates for women are highest among African Americans, followed by Caucasians, Hispanics, and Asian/Pacific Islanders. Cancer is the leading cause of death for female Asian Americans since 1980. Colon cancer continues to kill more African Americans than Caucasians for reasons that are not completely understood. According to the Intercultural Cancer Council, this is due in large part to delayed diagnosis coupled with less than appropriate patient care. In addition, individuals of all ethnic backgrounds who are poor, lack health insurance, or otherwise have inadequate access to quality cancer treatment experience higher cancer incidence, higher mortality rates, and lower survival rates. As a result, members of these populations may put off the expense of seeing a doctor until they are very sick and are diagnosed at a later stage, and thus have a poorer chance of survival.

Key Statistics about Cancer in Minorities from the American Cancer Society:

  • African-Americans have the highest death rate and shortest survival following diagnosis of any racial and ethnic group in the U.S. for most cancers.
  • It is estimated that about 169,000 new cancer cases will be diagnosed among African-Americans by year’s end. Approximately 66,000 African-Americans will die from cancer.
  • The most commonly diagnosed cancers among African-American men are prostate, lung and colorectal.
  • Among African-American women, the most common cancers are breast, lung and colorectal. 
• Nearly 99,000 new cancer cases in Hispanic men and women were diagnosed in 2009. Among Hispanics, there were 29,000 cancer deaths.
  • Prostate cancer is the most commonly diagnosed cancer in Hispanic men, while lung cancer accounts for the largest percentage of deaths in that group.
  • Breast cancer is both the most commonly diagnosed cancer and the leading cause of cancer death among Hispanic women.
  • Among Asian Indian and Pakistani women, breast cancer is the most diagnosed cancer and the leading cause of cancer death. (National Cancer Institute)

For more information about how cancer affects minority populations, please visit the Intercultural Cancer Council or click HERE.

Tomorrow’s Virtual Grand Rounds: Case Studies in Oncofertility

Tomorrow, April 11th, we are excited to be hosting Clarisa Gracia, MD, MSCE, Associate Professor of Obstetrics and Gynecology at the University of Pennsylvania, for our Virtual Grand Rounds at 10 AM CDT. Her presentation entitled, Case Studies in Oncofertility, will analze indviduals who have undergone fertility preservation following a cancer diagnosis, and the developmental factors related to their decision. Dr. Gracia is also a contributing author in the Oncofertility book series, lending her clinical expertise and experience to the subfield, and she is an integral member of the Oncofertility Consortium. Click here to watch Dr. Gracia present her Virtual Grand Rounds, tomorrow at 10 AM CDT.

For those who are not aware of these special rounds, they are live videoconferences with experts in the fields of reproduction, cancer, and oncofertility. The rounds provide researchers, clinicians, and others the opportunity to hear emerging research findings from anywhere across the globe and participate through a live video chat. Virtual and in-person attendees to the rounds can also receive free continuing medical education (CME) credits by following the instructions here. Within one week of the rounds, a video recording will be posted on the Oncofertility Consortium website and CME credits will be available to online viewers. To read more about receiving education credits from the Oncofertility Consortium, read about the Oncofertility Online program.

California Bill AB 912: Mandated Fertility Preservation Coverage

Wouldn’t it be great if insurance companies were required to provide coverage for medically necessary expenses for standard fertility preservation services when a medical treatment may directly or indirectly cause infertility to an enrollee or insured? California Assemblywoman Sharon Quirk-Silva, thinks so too and recently introduced CA bill AB 912, which proposes to do just that.  On behalf of the Oncofertility Consortium, we support bill AB 912, and we encourage others to learn more about the positive implications of this bill as well.

AB 912 provides for insurance and HMO coverage of fertility preservation services when future fertility will be put at-risk by treatment of a disease such as cancer, sickle-cell anemia or lupus. While the numbers of people who will need the services is likely to be small, for those people facing a life-altering disease which could require chemotherapy or radiation or both with a high potential for causing infertility after treatment, this coverage could make all the difference. People who have the option for these services score much higher on quality of life measures after treatment. Probably more importantly is that by providing this coverage, the patient is able to keep focus on what would be the best therapy for their disease, without having to worry about the effect on their future fertility.

Mandating insurance coverage for fertility preservation will transform the quality of life for cancer survivors. Fortunately, the relatively small numbers of people in their reproductive years who will need this care will only minimally impact insurance premiums when spread out amongst all insured persons. Without insurance coverage, patients may forgo fertility preservation, which may result in compounded costs for the survivor years later when trying to build a family.

While the cost to preserve fertility is relatively modest, most patients are unable to afford this unexpected out-of-pocket expense, especially at a time when they may be facing other significant cost pressures surrounding the treatment. A short time frame between diagnosis and treatment that does not allow time to seek appeal when insurance companies deny fertility preservation coverage further complicates this.

As survivorship for a typical cancer improves, the ability to bear children after therapy is an understandable and expected concern. For some patients, cancer treatment options may be decided based on its risk of fertility loss rather than fully focusing on its effectiveness to cure the cancer. AB 912 will provide fertility preservation insurance coverage for patients undergoing treatments known to compromise fertility. This is an equitable and cost-effective solution to a foreseeable harm from medically necessary treatment. Please support bill AB 912, ensuring fertility preservation coverage for those who may lose their reproductive potential through no fault of their own.

New Chemo Drug Gentler on Fertility, Tougher on Cancer

By Marla Paul

A new gentler chemotherapy drug in the form of nanoparticles has been designed by Northwestern Medicine® scientists to be less toxic to a young woman’s fertility but extra tough on cancer. This is the first cancer drug tested while in development for its effect on fertility using a novel in vitro test.

The scientists designed a quick new in vitro test that predicts the toxicity of a chemotherapy drug to fertility and can be easily used to test other cancer drugs in development as well as existing ones. Currently the testing of cancer drugs for fertility toxicity is a time and resource intensive process.

“Our overall goal is to create smart drugs that kill the cancer but don’t cause sterility in young women,” said Teresa Woodruff, a co-principal investigator of the study and chief of fertility preservation at Northwestern University Feinberg School of Medicine. The paper was published March 20 in in the journal PLOS ONE.

The scientists hope their integration of drug development and reproductive toxicity testing is the beginning of a new era in which chemotherapy drugs are developed with an eye on their fertotoxity (fertility toxicity). As cancer survival rates increase, the effect of cancer treatments on fertility is critically important to many young patients.

Read more…

Introducing Cancer Survivorship Training for Healthcare Professionals

There are an estimated 13 million cancer survivors living in the US today, with projected growth to 18 million by 2020. As a result, many healthcare groups and cancer centers are not equipped to address their growing survivor populations. Stemming from this need for quality after care, researchers from the University of Kansas (KU) developed Cancer Survivorship Training (CST), an eLearning solutions provider, to help improve the lives and well-being of cancer survivors by educating and training the healthcare professionals that care for them.

CST online and community courses are designed to increase education, knowledge and skills about survivorship care through theory-based and practical continuing education online curriculum and mobile based learning. The training also provides essential tools for developing and sustaining formal survivorship programs, including oncofertility resources. The Oncofertility Consortium partnered with researchers at KU to help develop CST’s oncofertility course, providing fertility preservation education and options. As studies have shown, fertility is an important factor in many young cancer survivors quality of life following treatment, thus educating patients about their reproductive options is a critical component of comprehensive cancer and survivorship care.

Lead developer of CST, Jennifer Klemp, PhD, MPH, is an Assistant Professor in the Department of Internal Medicine at the KU. Dr. Klemp has a strong interest in patients’ quality of life issues following cancer treatment and is the Director of Cancer Survivorship at KU Cancer Center. She designed CST to deliver continuing education to health care providers actively involved in the care of cancer survivors, including; physicians, oncology nurses, mid-level practitioners, allied health professionals, and practice administrators.

CST emphasizes the importance of post-treatment survivorship care as well as the opportunity for education and prevention of late and long-term effects, including infertility, from the time of diagnosis.  The multi-disciplinary approach provides the healthcare provider with information to care for the needs of cancer survivors from the time of diagnosis and develop skills focusing on essential elements to the delivery of survivorship. To learn more about Cancer Survivorship Training, please visit www.cancersurvivorshiptraining.com or click here.

Recent Advances in Ovarian Tissue Cryopreservation

By Danielle Alyce Fanslow, Francesca Duncan, and Kate Timmerman

There are several methods of fertility preservation open to female cancer patients who wish to start a family after treatment including cryopreservation of oocytes, embryos and ovarian tissue. Cryopreservation is a method of preserving biological material by storing it at extremely low temperatures. Choosing a  fertility preservation method is highly patient-specific and depends on factors such as patient age, the availability of a partner, and/or the sensitivity of the tumor to hormones.  A good option for pre-pubertal patients and patients who must undergo treatment as soon as possible after diagnosis may be cryopreservation of ovarian tissue.  However, current techniques for tissue cryopreservation may be improved as only 22 successful pregnancies have resulted from this method [1].

A group of Oncofertility researchers at the Oregon National Primate Research Center (Ting, Yeoman, Campos, Lawson, and Zelinksi) together with cryopreservation experts (Mullen and Fahy) have been developing new methods for cryopreserving ovarian tissue with the focus on preserving follicle health and quality.  Findings from their most recent work was published in the journal Human Reproduction in an article entitled “Morphological and functional preservation of pre-antral follicles after vitrification of macaque ovarian tissue in a closed system.”  This work provides insight that may lead to improved clinical protocols for ovarian tissue cryopreservation.

The goal of cryopreservation is to minimize injury to cells from the freezing process while limiting the toxicity of cryoprotective agents [2]. The current protocol for ovarian tissue cryopreservation involves slowly freezing the tissue with low concentrations of cryoprotective agents to avoid ice crystal formation inside the cell but to allow ice formation outside the cell [1]. However, ovarian tissue has an abundance of cell types and important extracellular material making it more complex to freeze compared to isolated cells. Vitrification is a method of cryopreservation that can avoid ice crystal formation inside and outside of the cell by quickly freezing the tissue with a high concentration of cryoprotective agent [3].   This method holds tremendous promise in the setting of fertility preservation and has already been applied successfully and routinely to egg and embryo freezing. However, researchers must optimize ovarian tissue vitrificaiton before it can be used in a clinical setting.

As the amount of human ovarian tissue available for research is limited, the Zelinski group used a non-human primate model to study several variables in the vitrification process including the type and concentration of cryoprotective agent used, the cooling rate, and the warming rate.  As a means to assess the quality of the tissue in each experimental condition, the researchers isolated ovarian follicles from the tissue and used them for encapsulated in vitro follicle growth (eIVFG) – a technique that this group had previously applied successfully to the non-human primate.  The researchers then monitored follicle health, diameter, and hormone production.   Using these techniques and assays,  the Zelinski group was able to determine a set of variables that resulted in the healthiest ovarian tissue. Through the findings by the Zelinski group, the field is one step closer to developing a standard protocol for ovarian tissue vitrification that can potentially result in a high rate of successful pregnancies.

References:

  1. Ting AY, Yeoman RR, Campos JR, Lawson MS, Mullen SF, Fahy GM, Zelinski MB. Morphological and functional preservation of pre-antral follicles after vitrification of macaque ovarian tissue in a closed system. Hum Repro. 2013. Feb 20th Ahead of Print.
  2. Pegg DE. The history and principles of cryopreservation. Semin Reprod Med. 2002 Feb;20(1):5-13.
  3. Pegg DE. The role of vitrification techniques of cryopreservation in reproductive medicine. Hum Fertil (Camb). 2005. Dec;8(4):231-9.

Fertility, Cancer, and Egg Donation: One Survivor’s Story

Alice Crisci, founder of Fertile Action, and contributing author to the fourth upcoming Oncofertility book, Oncofertility Communication: Sharing Information and Building Relationships across Disciplineshas been in the news recently for her vocal opposition to a California bill that prohibits women from getting paid for donating their eggs for medical research. Now at 11 weeks pregnant, we asked her to tell to share her cancer story with us, including her advocacy and policy work.

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Q: Tell us a little bit about how you got involved in cancer and fertility advocacy?

I was diagnosed with breast cancer in 2008, and launched my non profit, Fertile Action, that same year. In 2009, I took my board to the National Breast Cancer Coalition (NBCC) annual conference. We were all shocked at the exclusionary policies of the NBCC towards young women, but had the good fortune of meeting with congress woman, Debbie Wasserman Shultz, about the Early Act (the Public Health Service Act to increase awareness of the risks of breast cancer in young women and provide support for young women diagnosed with breast cancer). We spent a day running around the Capitol lobbying for her bill, and I saw firsthand how I could be an influencer in setting or opposing policies. Since then I have worked at the California state level, and federal level on meaningful initiatives that support young adult cancer survivors.

Q: Based on your cancer diagnosis and treatment plan, how long were you advised to wait to start a family after you completed cancer treatment?

My treatment was very long – almost 3.5 years before I was taken off all medications. 2.5 years of that was spent in medical menopause so I was not producing hormones that could support a pregnancy. I started trying naturally about a year later and had three chemical pregnancies/early miscarriages. I finally decided to use the “totsicles” I created with a sperm donor when I was diagnosed. My first transfer was a success, and on my five year cancerversary I heard my baby’s heartbeat for the 2nd time and balled my eyes out! My doctor approved me going off tamoxifen early because of the additional treatment of medical menopause. It’s such a toxic medication that he recommended I wait six months before trying to get pregnant. That six month wait turned into almost a year before having my first pregnancy loss.

Q: How has your cancer survivorship care influenced your fertility story? 

Had anyone told me when I was first diagnosed that I would be in some form of treatment for over 3 years, I wouldn’t have started! I thought it was surgery, chemo and done. Six months of my life, and that was that. I was very sick from all the treatment for so many years, then dealing with so many side effects after ending treatment, My fertility plans continued to get delayed. I was also financially devastated from going through cancer, and it took a long time to start rebuilding to the level where I thought I could afford a family.

Q: You have been a vocal critic of the CA bill prohibiting compensation to women for donating their eggs to medical research. How do you think a reversal of this bill would impact cancer care?

To date, we have focused more on quantity, but there are ample women like me who have eggs left that don’t produce a live birth. If we can study chemo’s impact on quality then we can also discover new interventions for preventing that impact. Fertility preservation is still prohibitive for many patients so we need to keep innovating in other areas. California’s current bill prevents any of the amazing researchers in this great state from conducting this type of study. Institutional Review Boards (IRB), especially at the university setting, do a great job of overseeing ethics, and preventing exploitation of vulnerable populations. In many cases IRB’s are much more restrictive than legislation!

 

To learn more about your fertility options following a cancer diagnosis, please visit www.SaveMyFertility.org.

Tomorrow’s Virtual Grand Rounds: Contraceptive Options During and Following Cancer Treatment

Don’t miss out on tomorrow’s Oncofertility Virtual Grand Rounds at 10 AM CST! For those who are not aware of these special rounds, they are live videoconferences with experts in the fields of reproduction, cancer, and oncofertility. The rounds provide researchers, clinicians, and others the opportunity to hear emerging research findings from anywhere across the globe and participate through a live video chat. Virtual and in-person attendees to the rounds can also receive free continuing medical education (CME) credits by following the instructions here. Within one week of the rounds, a video recording will be posted on the Oncofertility Consortium website and CME credits will be available to online viewers. To read more about receiving education credits from the Oncofertility Consortium, read about the Oncofertility Online program.

Tomorrow, March 7th, we are excited to be hosting Cassing Hammond, MD, Associate Professor of Obstetrics and Gynecology at Northwestern’s Feinberg School of Medicine, and Jessica Kiley, MD, Assistant Professor of Obstetrics and Gynecology at Northwestern’s Feinberg School of Medicine, for our Virtual Grand Rounds at 10 AM CST. Their presentation entitled, Contraceptive Options During and Following Cancer Treatment, will review current birth control methods available to cancer patients, which vary depending on the type of cancer a patient is diagnosed with. Click here to watch Dr. Hammond and Dr. Kiley present their Virtual Grand Rounds, tomorrow at 10 AM CST.

Science, Policy, and the Dickey-Wicker Amendment (Part 2)

By Cathryn Smeyers

This is the final installment in a two-part blog story featuring Oncofertility Consortium member, Gregory Dolin, MD, JD, focusing on his recent Oncofertility Virtual Grand Rounds presentation. To read the 1st blog, click here.

In his presentation, Dr. Dolin highlighted some of the problems that exist within the legislative process that make it even harder for scientific issues to be successfully conveyed to lawmakers.  According to Dr. Dolin, the hearing process, which many assume involves full congressional engagement, the presentation of relevant information and lively debate, is often more like “kabuki theater.”  Only invited participants are allowed to testify, hearings are rarely and sparsely attended, and the chairman has a nearly complete control of the agenda and the text of any proposal discussed.  Furthermore, after the hearing, much work is done by the staff in secret, the House Rules Committee can amend or rewrite the bill in any way it sees fit, floor debates may be very limited, and Conference Committees once again have the opportunity to amend or rewrite the bill outside of public view.

So what’s the solution?  How can we ensure that the people in control of federal dollars are scientifically literate and well informed?  Dr. Dolin proposes the creation of an objective body of scientific advisors charged with evaluating all proposed bills and advising Congress of the likely effect of legislation.  This body would also have to solicit scientific input from members of the public, which would allow scientists to register their opinions.  Models of this currently exist in the form of the Congressional Budget Office and the late Office of Technology Assessment. The creation of such an office, however, is just a proposal, and we are unlikely to see it realized in the near future.  In the interim, Dr. Dolin advises that scientists involve themselves in the legislative process and do what they can to ensure that Congress hears and understands complex scientific research.

The Oncofertility Consortium whole-heartedly agrees with Dr. Dolin, and we feel that Dickey-Wicker underscores the necessity for scientists to not only have a voice in the political sphere but to be adept communicators who can appropriately relay complex scientific information to a lay audience.  We hope our blog, for example, allows us to relay scientific research in a way that is both comprehensible and meaningful to our readers. Repropedia (www.repropedia.org) is another tool that we use to clearly communicate scientific information.

Repropedia is a website that is edited by scientists across the globe and serves as an authoritative source of definitions for reproductive health terms. This site directly interacts with other website by providing pop-up definition boxes, so a reader gets the information in context.  Our blog serves as the perfect example!  Of course, we couldn’t let Dr. Dolin go without contributing to this valuable resource. He kindly agreed to contribute a video definition of the term “parthenote,” and we sincerely hope that the general public (Congress included!) will benefit from his explanation.  In the end, it is exactly this kind of clear communication by the scientific community that will educate the public and inform public policy.

Click here to see Dr. Dolin’s Repropedia definition.  Click here to read the chapter he co-authored in the second Oncofertility book, Oncofertility: Ethical, Legal, Social, and Medical Perspectives, entitled, “Medical Hope, Legal Pitfalls: Potential Legal Issues in the Emerging Field of Oncofertility,” and look for his contribution to the fourth Oncofertility book due out later this year entitled, Oncofertility Communication: Sharing Information and Building Relationships across Disciplines.

Science, Policy, and the Dickey-Wicker Amendment (Part 1)

By Cathryn Smeyers

On Thursday, February 21st, Gregory Dolin, MD, JD, Associate Professor of Law and Co-Director of the Center of Medicine & Law at the University of Baltimore School of Law, delivered our Virtual Grand Rounds.  His talk, entitled “Speaking of Science: Legal Updates in Oncofertility,” focused on the knowledge gap that often exists between the scientific community and government policy makers and the serious ramifications this can have on scientific progress.  To illustrate this point, Dr. Dolin focused specifically on the Dickey-Wicker Amendment.

The Dickey-Wicker Amendment (DWA), passed by Congress in 2006, bans federal funding for research using embryos and parthenotes (a group of cells derived from an egg that begins dividing without fertilization from sperm). Parthenotes contain genetic material from only the maternal source, whereas embryos are created through fertilization and contain genetic material from both female and male. In higher-order organisms (including humans), a parthenote cannot result in a viable full-term offspring.  Consequently, when the DWA expanded the ban on federal funding to include parthenotes, in addition to embryos, it put an end to scientific research being done on cells that have no potential to result in human life.

Scientific research involving parthenotes is key to oncofertility because it provides invaluable insight into the early stages of pregnancy and embryonic development (which can lead to improvements in Assisted Reproductive Technologies), miscarriages, and tumors. Objections to the use of embryos in research stem from the claim that embryos constitute (or have the potential to become) human life.  Parthenotes, however, do not experience fertilization and do not have the potential to become human life.  Why, then, with regard to federal funding for scientific research, should parthenotes be placed in the same category as embryos?

This is the very question that Dr. Dolin tackled in last week, and his answer was alarming.  According to Dr. Dolin, Congress often legislates without understanding the full scope of its enactments.  He argues that the problem is particularly acute in the areas of science, because Congressmen do not understand science.  Currently, out of the 535 members of Congress, we have one physicist, 22 people with medical training, one chemist, one microbiologist and six engineers.  Consequently, when it comes to complex scientific issues, such as the distinction between an embryo and a parthenote, Congress can pass legislation based on incorrect or incomplete information.

Keep reading tomorrow for Part 2…

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