Journal of Clinical Oncology Covers Adolescent and Young Adult (AYA) Cancer

On October 12, 2010 a special issue of the Journal of Clinical Oncology will highlight the importance of adolescent and young adult (AYA) cancer awareness. In an overview on AYA oncology, David M. Thomas, et al., emphasizes the “clear clinical need” for a new subfield of oncology. Issues that are important to AYA cancer patients are relevant to many clinicians, from oncologists (pediatric, medical, and radiation specialists) to nurses, psychologists, and reproductive endocrinologists.

In addition to the fertility issues that we often discuss on this blog, AYA patients need tailored approaches to care depending on their age. Unfortunately, there is a lack of data on the side effects of specific chemotherapy and radiation treatments on AYA patients. The quality of survivorship is also important to the AYA population and requires clinicians to have a broad understanding of the many life changes that patients may go through during or after treatment including attending college, entering the workforce, or starting a family.

A position statement in the same issue calls for increased training for health professionals that work with AYA populations. Specifically the authors recommend that professionals have AYA-specific clinical knowledge and can deliver appropriate care to their patients. In the case of oncofertility, this would require the clinical community to know all of the currently available fertility preservation options and deliver care by referring them to appropriate reproductive specialists. The Oncofertility Consortium tries to facilitate this process through the FERTLINE that helps providers and patients understand the fertility preservation options available in their area.

The Young Adult Alliance was started to mobilize the many organizations that care about AYA issues and holds an annual conference every year. This November, members of the Oncofertility Consortium will attend the conference and present their knowledge on navigating oncofertility patients and the different perspectives in oncofertility. We look forward to meeting with the AYA community and hearing their insights on the issues!

Watching Football and Thinking about Oncofertility

I’m a huge football fan, so most Sundays in the fall and winter are spent watching games.  Starting this past Sunday and running until the end of the month, all of the NFL teams will accent their uniforms and gear with pink, in support of the American Cancer Society’s breast cancer awareness campaign.  During one of the games, my friend commented, “I’m all about pink and bringing attention to a cause, but is this really what my donation to cancer research is paying for?”  Her question really got me thinking about how awareness campaigns are run and whether or not they fulfill their mission improve health outcomes.

Coincidentally, the Los Angeles Times published an article questioning the benefits of awareness campaigns.  The author highlighted a few reasons why awareness campaigns, specifically breast cancer awareness campaigns, may not have the impact they promise: little improvement in breast cancer mortality rates; lack of alignment of the goals of the campaign with developments in breast cancer research, which may lead to women being over-diagnosed and undergoing unnecessary treatments; and conflict of interest between purpose of the campaign (i.e. increase and improve early detection of breast cancer) and sponsorship by pharmaceutical companies that provide breast cancer drugs.  Her compelling arguments made me think about whether the Oncofertility Consortium’s own awareness efforts have similar characteristics and what could be done to strengthen its campaign.

The Oncofertility Consortium raises awareness on all different fronts by approaching solutions to fertility impairment from cancer treatment in partnership with basic scientists, clinicians, and social scientists and humanists.  Basic scientists involved in fertility preservation research use the newest, groundbreaking materials and techniques to increase cancer patients’ likelihood of having children after fertility-threatening cancer treatment.  Clinically speaking, the impact of the Oncofertility Consortium occurs at the time of a young patient’s cancer diagnosis when information is exchanged about what fertility preservation options are available.  Whether or not the patient decides to pursue fertility preservation, the critical element is that the patient, regardless of prognosis, socioeconomic status, and race, is made aware that her cancer treatment may affect her fertility and that now is the opportunity to act.  Consortium social scientists and humanists examine case studies and conduct “thought experiments” to reflect on the historical, ethical, and social implications of fertility preservation.  In all, the Oncofertility Consortium’s education and dissemination efforts avoid the potential pitfalls of awareness campaigns by staying on top of the science, respecting the patient’s wishes regarding her fertility, and examining the societal and ethical conflicts that surround fertility preservation.

Of course, the Consortium’s awareness campaign is a dynamic work in constant progress and growth.  The Oncofertility Consortium strives to engage trainees and fellows in the basic, clinical, and social sciences and humanities to become the next generation of fertility preservation experts.  Outreach to cancer support and advocacy communities continues to develop in order to spread the message of the Oncofertility Consortium through existing local and nationwide networks.  Resources such as publications, patient and provider testimonies, training videos, and conference presentations are regularly updated and added on the Oncofertility Consortium and MyOncofertility.org websites.  Through consistent vigilance and self-evaluation, the Oncofertility Consortium ensures that its awareness campaign remains effective and valuable to cancer patients and their families.

Cancer Rights Conference in Los Angeles This Friday

This Friday, October 8, the Cancer Legal Resource Center will host a conference in Los Angeles on the many complex legal issues surrounding cancer. This all-day, free conference will cover a variety of quickly evolving issues, such as health care reform and local cancer community resources. The conference hopes to attract professionals throughout the cancer community including nurses, clinical social workers, marriage and family therapists, and attorneys, who can all gain continuing education units for attending the conference.

We first covered the Cancer Rights Conference this past June when it was held in Chicago, IL. The upcoming conference is bringing back some popular sessions, including Estate Planning and Life Insurance, and adding new talks. One new session will cover the rights of young people with cancer. Hosted by education attorney Andrea Oxman from the Disability Rights Legal Center, the CLRC’s umbrella organization, the seminar will discuss cancer issues for children and young adults, such as education and insurance coverage.

Monica Fawzy, a staff attorney at the Cancer Legal Resource center recently spoke with us about the conference. According to Fawzy, a Genetics and the Law session will cover, “The role that genetics plays into the law and coping with cancer.” The session will discuss the Genetic Information and Nondiscrimination Act and some of the decisions that young adults have to make if they are going to get tested for cancer susceptibility genes. “As we’ve seen, the law is very slow to catch up with this new technology,” said Fawzy, and the conference will discuss issues that young people should think about going forward.

A session on Employment will also clarify the protections for cancer patients in work environments. According to Fawzy, the panel will be comprised of  “a physician, an attorney, and an expert from the advocacy group Cancer and Careers,” who will discuss the federal and local laws that allow people to retain benefits, take medical leave, and avoid discrimination in the workplace.

The conference will also explain some recent changes in health care reform. As the health care laws are currently in a state of flux, we are pleased that the Cancer Legal Resource Center has plans to put on another set of conferences during 2011 in Chicago, IL; Washington, DC; and Ann Arbor, MI. For those based on the West Coast, Friday’s conference at the Ronald Regan UCLA Medical Center in LA is an opportunity to learn about cancer rights from the experts.

Publication of New Oncofertility Book

The Oncofertility Consortium finds new ways to prevent life-saving cancer treatments from destroying fertility through multiple avenues of scientific research. But this emerging field does not live in isolation and the consortium addresses larger issues in oncofertility through discussions with communicators, economists, historians, and religious and legal scholars. A compilation of these conversations results in a new book that is now available for sale. The book, entitled “Oncofertility: Ethical, Legal, Social, and Medical Perspectives,” can be found at Amazon.com. Over the next few weeks, we will give you a taste of some of the interesting ramifications in this cutting-edge field through our blog…so stay tuned!

Inventor of In Vitro Fertilization Wins Nobel Prize

The Nobel Prize committee announced today that the 2010 Nobel Prize in Physiology or Medicine is awarded to Dr. Robert Edwards for his role in developing human in vitro fertilization (IVF).

In the 1950s, a young Robert Edwards earned his Ph.D. by performing research on the reproductive physiology of mice. After graduation, he became increasingly interested in helping patients with infertility. According to a 2001 commentary in Nature Medicine, he lamented, “What could I do for patients? Literally nothing until human eggs were fertilized in vitro.”

Over the next thirty years, Dr. Edwards studied the maturation of immature eggs, called ooytes, and determined that different hormones could help women mature multiple eggs at one time. With the help of gynecologist, Patrick Steptoe, the world expert laparoscopy, a procedure that can be used to remove oocytes, the team combined their expertise to help infertile patients. In late 1977, the collaborators removed an egg from Lesley Brown, fertilized it in a petri dish, and successfully transferred the resulting eight-cell embryo back to Brown in a procedure now commonly called IVF.  On July 25, 1978 Louise Brown was born to much fanfare and labeled the first “test-tube” baby.

Since that time more than 4 million children have been born from IVF and it is used in about 3 percent of all live births in developed countries. IVF is also frequently used as a method for fertility preservation for cancer patients. In such cases, women who can, delay cancer treatment to mature multiple eggs and then have them removed and fertilized.

In contrast to Lesley Brown, fertility preservation patients can now cryopreserve, or freeze, their embryos for transfer after cancer remission. As many cancer patients cannot delay treatment, the Oncofertility Consortium developed ovarian tissue cryopreservation (OTC) to help women preserve their fertility without a delay in chemotherapy or radiation. We continue to develop additional fertility preservation techniques so all cancer patients are able to have children after cancer. We hope that these efforts will someday have the impact for cancer survivors that Dr. Edwards’ research had for infertile women.

Breast Cancer & Oncofertility

October is Breast Cancer Awareness Month!

This week, The Washington Post shed light on a section of the health care reform law that directly impacts breast cancer research in young women in terms of desired outcomes and available funding.  Between 2010 and 2014, the law allocates 9 million dollars annually to the National Institutes of Health for disbursement to breast cancer research and advocacy groups to develop new mechanisms that will allow breast cancer to be detected earlier and one day prevented.

In 2010, the American Cancer Society reports that there have been 207,090 new cases of invasive breast cancer in women in the U.S; of the women who get breast cancer every year, approximately 10 percent are women who are younger than 45.  As early detection tools are currently being developed and tested, especially with the new funds from the health care reform law, this number is sure to increase.  For these young women, making it through their cancer therapy and surviving the disease is a top priority.  But what are the ramifications of an aggressive cancer and an equally aggressive treatment plan on a young women’s fertility?

Depending on her course of treatment, a breast cancer patient who is of reproductive age may be at risk for losing her fertility.  The Oncofertility Consortium works to anticipate potential fertility issues at the time of cancer diagnosis, so patients have as much time as possible to learn about and discuss options to preserve fertility.  In 2010, approximately 23% of the encounters between the Oncofertility Consortium’s patient navigators and patients seeking information and options have been women diagnosed with breast cancer.  Mature technologies, such as embryo freezing, and experimental techniques, such as egg freezing and ovarian tissue cryopreservation, are methods through which breast cancer patients can preserve their fertility.  While in some cases, patients decide not to pursue fertility preservation options, the Oncofertility Consortium, patient navigators who answer the national hotline (866-708-FERT), and MyOncofertility.org are there to offer options and to connect patients with a local fertility preservation program.

The need for fertility preservation to be incorporated as a standard in cancer care will increase as detection methods improve.  Perhaps another approach in using the new research funds would be to support projects that investigate cancer prevention, detection, and fertility preservation.

New Changes in Health Care Reform Affect Oncofertility Patients

Last week, while we at the Oncofertility Consortium were preparing for our annual conference, some aspects of the Patient Protection and Affordable Care Act, better known as the health care reform bill, took effect. Some of these changes particularly affect young people and those dealing with cancer.

On September 23, health insurance policies were prohibited from putting lifetime limits on health insurance coverage. In addition, the health care reform bill phases out annual limits in coverage and the first step occurred last week. The recent change prevents health insurance companies from putting coverage limits on preventative care such as vaccines and mammograms but still allows some annual limits.

Another phase-in, limiting health insurance coverage denials for preexisting conditions, began on September 23. With the change, children under the age of 14 can no longer be denied health insurance coverage to do to a prior condition. This means that parents of children with cancer can freely change jobs without worrying that their child will be denied coverage under a new employer’s insurance.

Additionally, “Kids up to 26 can now be covered on their parents policy if they do not have employer coverage,” said Monica Fawzy, an attorney at the Cancer Legal Resource Center, in a recent interview. This means that college-age students who are diagnosed with cancer do not have to worry about losing health insurance coverage if they withdrawal from school to undergo treatment.

It is important to remember that while these changes did go into effect last week, they apply only to health plans that are issued or renewed on or after September 23. Since most people receive insurance renewals in January, please contact your local health care liaison before making any decisions. Also, the Cancer Legal Resource Center has a toll free Telephone Assistance Line (866/THE-CLRC) for information on relevant laws and resources for your specific case.

Successful 2010 Oncofertility Consortium Conference

The fourth annual gathering of oncofertility specialists occurred this week at Northwestern University’s Prentice Women’s Hospital in Chicago, IL. More than 150 people from 24 states across the US and three countries joined in on two days of talks and workshops. The events ranged from seminars on follicle development to discussions on the complex issues that patient must deal with when simultaneously facing cancer and potential infertility diagnoses.

The keynote talk was presented by one of the founders of fertility preservation for cancer patients, Leslie Schover, Ph.D. Dr. Schover is a Professor at the University of Texas, MD Anderson Cancer Center and has spent much of her career focusing on a variety of topics related to fertility and cancer. Her talk emphasized the complexities in patient decision-making in oncofertility and was well received by the audience of clinicians, science and humanities researchers, and educators.

The day ended with a dual poster session and reception that allowed oncofertility trainees to present their work to an international audience. In fact, some of the high school girls in the San Diego Oncofertility Academy sent posters to the conference. The session included video posters of new multimedia that allow scientists to share experimental results in real-time and across thousands of miles.

The second portion of the conference included workshops in the laboratory sciences and a discussion of new oncofertility education. These engaging discussions lead to many new ideas for the consortium as a whole and for next year’s conference-so stay tuned!

Affording Fertility

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In 2010, the American Cancer Society estimates that more than 135,000 people under age 45 will be diagnosed with cancer. Though cancer treatments, such as chemotherapy and radiation, can destroy fertility, medical treatments can prevent fertility loss for many people. The Oncofertility Consortium is working to develop fertility preservation for every single woman, man, and child diagnosed with cancer.

How do people pay for these fertility preservation treatments? In a perfect world, the same health insurance that covers cancer treatment would also pay for fertility preservation. Many cancer patients do get their fertility preservation treatments covered by insurance, often with the help of patient navigators and medical advocates.

However health insurance may not cover fertility preservation for all people. As fertility preservation is prohibitively expensive to many people, some women find that they must decline treatment. This happened to Tamika Felder, the founder of Tamika & Friends, who we wrote about a few weeks ago. Like us, she believes that nobody should lose their fertility over financial issues.

Fortunately, some payment options are available to patients who cannot afford fertility preservation on their own. Sharing Hope is one program that provides financial assistance to qualifying cancer patients trying to preserve their fertility. Through partnerships with a pharmaceutical company and many reproductive endocrinologists, Sharing Hope provides discounted fertility drugs and procedures to cancer patients.

In addition, local fertility preservation centers may wave fees for oncofertility patients. Patient navigators at the FERTLNE have experience reducing costs for patients. As more cancer survivors tell their success stories of fertility preservation, financial assistance will also increase. By combining scientific research with patient empowerment, we can provide all cancer survivors with the ability to have their own biological children.

Live Streaming of the 2010 Oncofertility Consortium Conference

As many of you know, the annual Oncofertility Consortium Conference: Big Ideas and Training the Next Generation is coming up in just a few short weeks. The meeting will highlight recent advances at the intersection of cancer and reproduction. This information will cover a diverse range of topic, from scientific research to strategies on educating the next generation of young people. The conference occurs on Monday, September 27 at the Oncofertility Consortium headquarters in Chicago, IL. This free event is open to all-the public, researchers, and health care providers. Register now!

For those that cannot make it in person to the 2010 Oncofertility Consortium Conference, this year’s events will also be available through live web streaming. Starting at 8:50 am (CST), participants can login as a guest through the Northwestern University Adobe Acrobat Connect website (LINK).

A few weeks after the conference, video recordings of the talks will be available on the Oncofertility Consortium website. Presentations from previous conferences are available here.

Come and see the exciting new work in oncofertility in person or online on September 27!

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