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…

Managing Pregnancy After a Cancer Diagnosis

Cancer during pregnancy is rare, occurring in approximately one out of every 1,000 pregnancies, with breast cancer being the most commonly diagnosed. In the past, both healthcare providers and women were often unclear about how to proceed with a pregnancy after a cancer diagnosis without jeopardizing either the mother or the fetus; however, as more women with cancer are deciding to start or continue cancer treatment while pregnant, more information about treating and living with cancer during pregnancy is available.  Oncofertility Consortium member Eileen Wang, MD, an OB/GYN who specializes in maternal fetal medicine (MFM) provides an overview of the management of women who are diagnosed with cancer during pregnancy in, “Pregnancy in Cancer Patients and Survivors,” a chapter in Oncofertility Medical Practice: Clinical Issues and Implementation.

Pregnancy can often delay a cancer diagnosis because some cancer symptoms, such as fatigue, nausea, or anemia, are common during pregnancy and are not considered suspicious. On the other hand, pregnancy can sometimes uncover cancer that has previously gone undetected. For example, a Pap test done as part of standard prenatal care can detect cervical cancer. Similarly, an ultrasound performed during pregnancy can find ovarian cancer that might otherwise go undiagnosed. According to Dr. Wang, “Once a woman receives a diagnosis of cancer during pregnancy, this should trigger a multidisciplinary approach to her care.”

When making treatment decisions for cancer during pregnancy, health care providers should consider the best treatment options for the mother and the possible risks to the developing fetus. The type of treatment chosen depends on many factors, including the stage of the pregnancy; the type, location, size, and stage of the cancer; and the wishes of the expectant mother and her family. Some cancer treatments can harm the fetus, especially during the first trimester, so treatment may be delayed until the second or third trimesters. When cancer is diagnosed later in pregnancy, doctors may wait to start treatment until after the baby is born, or they may consider inducing labor early. In some cases, such as early-stage cervical cancer, doctors may wait to treat the cancer until after delivery.

The prognosis for a pregnant woman with cancer is often the same as other women of the same age with the same type and stage of cancer; however, if a woman’s diagnosis or treatment is delayed during pregnancy, the extent of the cancer may be greater. In addition, because of the amount of hormones produced during pregnancy, they have the potential to affect the growth and spread of some types of cancer. Dr. Wang concludes, “A multidisciplinary approach involving the patient and her support network, the oncology and surgery teams, and the obstetrical and MFM team is required to give the patient the best medical counseling and care and to manage her expectations during the pregnancy regarding her future child in the context of treatment and prognosis.” Read “Pregnancy in Cancer Patients and Survivors.”

Oncofertility Consortium Member, Laxmi Kondapalli, MD, MSCE, in the Spotlight

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.

Chicago Tribune Talks Fertility Preservation with Oncofertility Consortium Members

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 17th at Floating World Gallery in Chicago.  Tickets and additional details can be found here.

Reproductive Medicine and Ethical Care

Fertility preservation in young cancer patients has come a long way in the last decade, as both patients and the medical community have galvanized to improve the information and reproductive technologies available surrounding oncofertility. In response to the increased likelihood of young men and women losing their fertility due to cancer and its treatment, the American Society of Clinical Oncology (ASCO) published fertility preservation guidelines for clinicians to follow when treating young cancer patients.  In recent news, the American Society for Reproductive Medicine (ASRM) announced that egg freezing would no longer be considered an “experimental” fertility preservation technique, making it easier for cancer patients to receive insurance coverage if they choose egg freezing as their method of fertility preservation. These developments stemmed from substantive evidence that fertility preservation among cancer patients facing fertility impairing treatment is an ethically sound practice, and in a new article entitled, “Lives in the Balance: Women With Cancer and the Right to Fertility Care,” by Clarisa Gracia, MD, and Jacqueline Jeruss, MD, the authors share a reproductive specialist’s view of oncofertility counseling that is important for the practicing oncologist to consider.

First, by discussing fertility preservation with their patients, oncology providers are allowing them to make informed decisions about their reproductive futures. To date, there is no evidence indicating that by discussing oncofertility with patients, it compels them to participate; rather, it demonstrates that they are receiving comprehensive cancer care, which includes survivorship care. In fact, according to the authors, “evidence indicates that patients with cancer who receive counseling about fertility preservation experience less long-term regret than those patients who do not receive counseling, even if the patients choose not to pursue fertility preservation.” Sharing this information with patients may also increase patient confidence in the medical community if they see that they are being treated as a whole person and not just a cancer diagnosis.

Next, an ethical concern raised surrounding oncofertility centers on the disposition of embryos and tissue, specifically as an increasing amount of biologic material is cryopreserved as a result of fertility preservation. Nonetheless, the authors argue that the burden on society will be minimal, since most cryopreserved material comes from healthy, infertile patients actively trying to conceive. They also claim that by striving for advances in fertility preservation options, fewer patients will choose to freeze embryos because they will have other options, reducing the potential ethical issues surrounding embryo ownership.

Finally, the authors address the argument that the allocation of funding and research dedicated to fertility preservation could be better utilized in other medical fields, since it affects such a small percentage of people. Gracia and Jeruss state, “although this may have been a legitimate concern in the past, the research accomplished under the auspices of fertility preservation thus far has furthered the understanding of reproductive physiology, leading to significant breakthroughs in the field of reproductive medicine.” It’s also important to note that these breakthroughs have a ripple affect and can lead to improved fertility options for healthy infertile patients, improved contraception methods, and the conservation efforts of endangered species. Read “Lives in the Balance: Women With Cancer and the Right to Fertility Care,” by Clarisa Gracia, MD, and Jacqueline Jeruss, MD, to learn more about reproductive medicine and the ethical concerns surrounding oncofertility.

New Frontiers in Male Fertility Preservation

Several of our recent blog posts have discussed fertility preservation in females, so we’d like to take a little time to shine a light on some interesting oncofertility research focused on males. The Oncofertility Consortium is committed to exploring the reproductive future of all young cancer survivors, and we have several members dedicated to advancing male fertility preservation. While oncofertility in males is relatively straightforward (sperm banking), investigators are currently researching ways to preserve fertility in pre-pubescent males in a procedure called testicular tissue cryopreservation. A chapter entitled, “Fertility Preservation in Males,” in Oncofertility Medical Practice: Clinical Issues and Implementation, authored by Landon Trost, MD, and Robert Brannigan, MD, examines this experimental procedure.

Sperm banking is not an option for prepubertal boys who are not yet producing sperm; however, they do have stem cells in their testes that are poised to begin producing sperm. As a result, investigators are researching other ways to preserve their reproductive function, and testicular tissue cryopreservation is a technique that shows promise. According to the authors, “Although pre-pubertal germ cells do not contain mature [sperm], they do demonstrate the presence of spermatogoniual diploid stem cells, which maintain the capacity to differentiate into mature cells given the appropriate microenvironment.” In other words, the tissue houses immature sperm cells that have the ability to transform into mature, functioning sperm provided the appropriate environment. Researchers are working on protocols that would enable physicians to use the frozen/thawed testicular tissue and stem cells to produce sperm in the laboratory or by re-implanting, years later, back into the individual.

Despite the promise that testicular tissue cryopreservation shows, it’s important to note that this is still an experimental procedure limited to IRB approved research facilities, and currently there is no way to use this tissue for reproductive purposes. There have been no studies to date demonstrating that a technique has been developed to transform the frozen testicular tissue into viable sperm, in vivo or in vitro. The idea behind this procedure is that at some point, technology will evolve enough to use the cryopreserved testicular tissue in assisted reproductive technologies.

Not only are there logistical limitations with the frozen tissue, but there are also some ethical concerns too. According to the authors,  “Given the underlying malignancy in patients undergoing testicular tissue extraction, there is concern regarding the potential for reseeding the cancer when the cryopreserved tissue is reintroduced in the native host.” For this reason, and due to the technological factors, testicular tissue cryopreservation is currently very limited. To learn more about male fertility preservation options, please visit www.SaveMyFertility.org.

Our Voice, Our Narrative, Our Twists on Cancer

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.

An Overview of Current Fertility Preservation Options

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.

 

Cancer Survivorship Gets Artistic March 2nd in Chicago!

According to the American Cancer Society, there are now more than 13.7 million cancer survivors in the United States. That number is expected to grow to nearly 18 million by 2022. After decades of focusing on treating cancer, we now face the challenge of helping survivors achieve a good quality of life once treatment has ended. According to the U.S. Centers for Disease Control and Prevention and the National Cancer Institute, 64% of adults diagnosed with cancer today can expect to be alive in five years. For children, survival rates range between 70% and 92%, with the 10-year survival rate at 75%.

For many, a cancer diagnosis may lead to a change in a person’s priorities regarding relationships, family planning, career, or lifestyle. Survivorship issues sometimes affect other areas of life after cancer treatment. Support services can help you deal with physical, emotional and day-to-day issues such as:

  • Difficulty on the job or in school
  • Changes in relationships with loved ones, friends or coworkers
  • Loss of self-esteem
  • Concerns about body image changes
  • Problems getting health or life insurance coverage
  • Stressors related to financial issues

As a result of the steady increase in cancer survivors each year, survivorship aftercare is gaining ground in treatment plans and witnessed in the uptick of organizations being formed to address the various physical, emotional and psychological needs survivors face. One such organization, The Arts of Courage Project, ACP, was formed “to create an empowering opportunity for cancer survivors to express themselves artistically.” The ACP objective is simple: pass it on. As a recent breast cancer survivor, founder Jorie Gillis has a deep desire to give back to an incredibly supportive community of cancer survivors. Combining her expertise and training in art, marketing, and now cancer, Jorie is following her passions and using them with the hopes of giving back.

On March 2nd, in Chicago, IL, the ACP is hosting an evening art event to raise awareness as well as charitable funds for cancer survivorship initiatives. The event is meant to draw anyone touched by cancer, and all who support the fight against cancer. If you are interested in helping those who are currently in the throes of dealing with a cancer diagnosis, or want to share your story/art within the survivor community, then you are encouraged to come out and celebrate! 100% of the proceeds will go to a charitable cancer foundation. ACP is actively seeking artwork created by anyone affected by cancer to showcase and auction at this event. For more information including registration, cost, venue, and how to donate your artwork, please visit The Arts of Courage Project website at www.artsofcourageproject.com.

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