by Megan Carlson, Guest Blogger for the Oncofertility Consortium

My name is Megan, and I will be your guest blogger for today.

I’m a journalism graduate student who had the great pleasure of shadowing Dr. Teresa Woodruff Tuesday as part of my health and science reporting practicum.

As soon as I arrived at 8 AM, Dr. Woodruff and I hit the ground running– greeting and checking in with the entire staff, from the program managers to the researchers already diligently at work in the lab.  This daily process is part of Dr. Woodruff’s efforts to maintain open communication with the entire lab.

We next traipsed over to a large conference room, where a group of 15 mostly-female scientists were already gathered with coffee and notepads ready for the weekly staff meeting, called the “R3 Data Club.”  Dr. Woodruff insists the entire team (who are located in several different locations) meet via web conference each week to discuss developments in the lab and present their research.  This is another explicit effort by Dr. Woodruff to ensure her team acts on the same page and immerses younger team members in the mission and work of the lab.

While some of the nitty-gritty details flew over my head (my knowledge of science could probably fill a thimble), I was impressed by the engagement of the staff as they listened to and questioned postdoctoral fellow, Pam Monahan, PhD’s, presentation on interactions among signaling pathways leading to potential disruptions in follicle development (itself, a possible contributing factor topolycystic ovary syndrome).

After the meeting, we rushed off to a government relations teleconference where a group, including Sharon Green, executive director of the Women’s Health Research Institute (WHRI) and Nadia Johnson, a program manager, planned the Chicago and Springfield Women’s Health Week celebrations.  Dr. Woodruff quickly switched her hat from hard-nosed scientist, asking pointed questions to her researchers about gene signaling pathways, to politically-savvy division chief, strategizing about how to best promote gender-specific scientific research to legislators, scientists and other interest groups.

I spent the remainder of the day shadowing Dr. Woodruff as she discussed efforts to increase enrollment in the Illinois Women’s Health Registry–an initiative that seeks to overcome the lack of sex-specific scientific research by connecting female research participants and researchers— and then following program managers and researchers who introduced me to the work of the Oncofertility Consortium.

The day was an educational whirlwind.  I absorbed a flood of scientific information about infertility, fertility preservation, and the reproductive system (augmented by time I spent Monday in the reproductive fertility clinic of Dr. Mary Ellen Pavone, who works closely with Dr. Woodruff).  I also witnessed the behind-the-scenes political work, research, and coordination that function to produce the newest innovations in fertility treatment and women’s health.  It was fascinating to see all the cogs in the machine interact together to create these beneficial and progressive outcomes.

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.

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…

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 20^th 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.

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 1^st 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.

By Cathryn Smeyers

On Thursday, February 21^st, 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…

Below is an excerpt from an article in the University of Colorado Cancer Center Fund E-News featuring Oncofertility Consortium member and Northwestern University alumna, Laxmi Kondapalli, MD, MSCE. To learn more about Dr. Kondapalli, read our three-part blog series, Training the Next Generation in Oncofertility.

By Jerry Sinning

Dr. Laxmi A. Kondapalli is a unique member of the University of Colorado Cancer Center. She joined the University of Colorado faculty in 2011 as Assistant Professor and Women’s Reproductive Health Research Scholar in the Division of Reproductive Endocrinology and Infertility. She came to the Cancer Center after finishing her education in the Northeast – receiving her Bachelor’s Degree from the University of Michigan, her Medical Degree at the University of Vermont College of Medicine, and a Master of Science in clinical epidemiology from the University of Pennsylvania. She completed her residency in obstetrics and gynecology at Northwestern University and fellowship in reproductive endocrinology and infertility at the University of Pennsylvania.

Dr. Kondapalli is the leader of the Oncofertility Program at CU Cancer Center. She does not see patients to discuss their cancer treatment options, but rather their family planning options as cancer survivors. Dr. Kondapalli’s program is one of only a handful in the country that provides an interdisciplinary approach to cancer treatment planning and care that includes clear family planning options for patients, community support services, research, education and outreach…

Read the rest of the article here.

By Cathryn Smeyers

A recent article in the Chicago Tribune entitled “New programs give hope to young cancer patients about bearing children,” discusses the field of oncofertility and how it can positively impact the lives of female cancer patients.

The article opens with the story of Jenna Benn, an Oncofertility Consortium favorite who was diagnosed with a form of lymphoma in her late twenties.  For Benn, the possibility that she could lose her fertility from life-saving cancer treatment was of great concern.  Fortunately, as Northwestern is the home base for the Oncofertility Consortium, Benn was in good hands and immediately introduced to Kristin Smith, the hospital’s Fertility Preservation Patient Navigator.  Smith outlined the primary fertility-sparing options that exist for young women facing cancer diagnosis: embryo banking, egg banking, ovarian tissue banking, or surgical procedures to remove or protect the ovaries.  Benn ultimately opted for egg banking and had her own eggs frozen before undergoing six rounds of intensive chemotherapy.

As the article goes onto discuss, though, unlike Benn, not all female cancer patients are made aware of the potential threat to their fertility and the choices available to them.  Dr. Teresa Woodruff coined the term “oncofertility” in 2006, and it is still a relatively young field.  While great strides have been made in availing patients of fertility preservation options, challenges still exist.  For example, there are many doctors who feel that it’s important to stay focused on saving a patient’s life and not necessarily her fertility.  Many women who are informed of their options are ultimately deterred by the cost of fertility preservation measures, which can run between $10,000-$15,000 and are not often covered by insurance.  Also, ethical questions arise with the question of how to handle unused embryos.

Everyday, the Oncofertility Consortium and our partners are working to overcome these hurdles.  We spread the word through our research, blogs, iphone app, and advocacy work.  After her struggle with cancer and fertility preservation, Benn is now a regular contributor to the Oncofertility Consortium and was our featured guest at last year’s gala.  Living in remission and now newly engaged, Benn runs her own cancer support group called Twist out Cancer, which “leverages social media to help survivors and their loved ones combat the feelings of isolation, loneliness, and helplessness that often accompany cancer diagnoses and treatment.”  Make sure to check out their upcoming event Brushes with Cancer, an evening celebrating survivorship and hope through art, music and storytelling, on Wednesday April 17^th at Floating World Gallery in Chicago.  Tickets and additional details can be found here.

Below is a guest post by Oncofertility Consortium favorite and cancer survivor extraordinaire,  Jenna Benn. Jenna is a young adult Gray Zone Lymphoma survivor, who preserved her fertility prior to beginning her cancer treatment in 2011. In the excerpt below, she writes about her experience as a cancer survivor, and shares some exciting news about an upcoming event being held in Chicago this April.

By Jenna Benn

Over the last two years I have spent a great deal of time connecting with other cancer survivors to learn about their unique experiences in managing their illness. Some of of these survivors describe feelings of isolation, loneliness, ostracism and misunderstanding, whereas others describe unprecedented love and support.  Some survivors describe their experiences as colored by profound loss and repeated victimization where as others describe it as a journey filled with countless blessings.

What is clear, is that there is not one cancer narrative- not one coping strategy- nor one particular model patient experience we can look to to mimic or follow.  Our experiences- our narratives-our reflections on what was and what is-is so deeply personal.  And perhaps our experiences and the way we choose to describe them-are influenced by where we stand. Are we recently diagnosed- currently in treatment- recently relapsed or post treatment?   The options are endless and the words we choose  to describe our stories, can quickly change depending on where we are at.

In my case, with little to no statistics or research to explain my diagnosis and treatment regimen, I realized early on that I felt empowered by writing my own story. Writing became my primary coping mechanism for how to navigate an experience that was traumatic, chaotic, yet undeniably mine. As I felt increasingly lonely and isolated I was deeply concerned that I would eventually lose my own voice. There were times when I appeared silent, but I was really screaming. And there were times when I was screaming yet struggling to speak.

Read the rest of the article.

By Cathryn Smeyers

A recent article in the December issue American Journal of Obstetrics and Gynecology, entitled “Fertility preservation in women of reproductive age with cancer” provides a comprehensive overview of the current options for fertility preservation in women with cancer. The authors identified six different options for fertility preservation, clearly outlining the benefits and drawbacks of each.

Embryo Banking

The most tried and true method of fertility preservation for women, embryo banking is like an in vitro fertilization cycle (IVF) cycle done for patients with infertility, except that the embryos are not immediately transferred into the patient.  Instead, after the oocytes are fertilized, the embryos are frozen and stored for the patient’s future use.

• Advantages:
  • Established technique with predictable success rates
  • IVF protocol can be altered to fit patient needs
  • Disadvantages:
    • Requires the male gamete and time for ovarian stimulation
    • Potential for ethical issues with regard to handling of unused embryos

Oocyte Banking

Oocyte banking has come a long way in recent years. Like embryo banking, the patient undergoes ovarian stimulation to promote the growth of multiple oocytes.  Unlike embryo banking, these oocytes are not fertilized before being frozen.

• Advantages:
  • Provides greater reproductive flexibility (no male gamete needed)
  • Success rates are improving
  • Disadvantages:
    • Requires time for ovarian stimulation
    • Track record not yet as strong as embryo banking

Ovarian tissue cryopreservation

Ovarian tissue cryopreservation involves the banking of ovarian tissue that can later be transplanted back into the patient to restore or improve her fertility.

• Advantages:
  • Avoids ovarian stimulation
  • Option for pre-pubertal girls
  • Possibility of pregnancy without future ART
  • Disadvantages:
    • Experimental procedure with unproven success rates
    • Risk of reintroducing cancer in patient’s body

In vitro maturation of oocytes

In vitro maturation of oocytes involves removing immature oocytes from ovarian tissue, maturing them in vitro, and then using ART.

• Advantages:
  • Provides greater reproductive flexibility
  • Avoids ovarian stimulation
  • Disadvantages:
    • Results in fewer viable oocytes in comparison to embryo/oocyte banking, but procedure requires a similar amount of time

Gonadal suppression with GnRH agonists
Gonadal suppression with GnRH agonists involves protecting the ovaries from the affects of cancer therapy by using hormones to suppress ovarian function at the time of treatment.

• Advantages:
  • No surgery required
  • Preserves hormonal function and fertility
  • Disadvantages:
    • Uncertain efficacy
    • Mixed results from trials

Ovarian transposition

Ovarian transposition is a technique in which the ovaries are protected from radiation by being surgically moved from the pelvis to another area of the body.

• Advantages:
  • Decreases the risk of ovarian failure from irradiation
  • Disadvantages
    • Useful only to patients who must undergo pelvic radiation
    • Surgical procedure required
    • Patient may require IVF/ART if fallopian tube is cut during procedure

To learn more about fertility preservation options before, during, and after cancer treatment, including which chemotherapy regimes are most likely to affect fertility, please visit SaveMyFertility.org.