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…

We now bring to you a guest blog from the cancer advocacy group Navigating Cancer Survivorship, which provides education and resources to health care professionals, survivors, and caregivers regarding the continuum of cancer survivorship.

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As previous blog posts have indicated, there are several laws that benefit and protect those coping with cancer. Some of these laws deal with health insurance coverage when participating in a clinical trial. Most recently, Illinois passed the “Qualified Clinical Cancer Trials” law, which has been in effect since January 1, 2012. This law, in essence, requires health insurers to pay for routine patient care expenses associated with qualifying clinical trials. Routine care costs are expenses that patients would have if they were getting standard cancer care, such as office visits, lab tests, and x-rays.

However, as we unfortunately know, it often takes more than a law to ensure that people are protected…to read the rest of this post and learn about the clinical trial laws in your state go to the Navigating Cancer Survivorship blog.

On March 23, 2010 the Patient Protection and Affordable Care Act was signed into law. This bill was designed to fill some of the health care gaps that prevented many Americans from receiving affordable health insurance. Since that time, the legality of the bill has been questioned and this past Thursday, the Supreme Court of the United States of America found the principle components of the bill to be constitutional in a case titled National Federation of Independent Business v. Sebelius (the Secretary of Health and Human Services).  One of the most controversial aspects of the bill requires that all American citizens acquire health care insurance or face a tax penalty, was also upheld. Many young cancer patients and survivors who are concerned with their fertility have also been affected by the bill and are assured that the changes implemented by the law are here to stay, as follows.

Beginning on September 23, 2010, the bill established that children under age 19 could no longer be denied health insurance coverage due to a preexisting condition, allowing parents of young children to freely change jobs without fear that their child would be denied insurance coverage under the new employer’s insurance. That date was also significant for older children, as children were allowed to maintain health care coverage under their parents plan until the age of 26 (previously it was 18 or higher if the child was a full time student) regardless of where they live or dependent/marital status.

Now that the Supreme Court has upheld the legality of the Act, additional changes will be implemented on January 1, 2014. Starting then, health insurance companies will no longer be able to deny coverage to anyone because of pre-existing conditions. This includes anything from cancer to pregnancy and will give young survivors the ability to get a job without risk of losing insurance coverage. Additionally, people will not be restricted to annual or lifetime limits, allowing young cancer survivors to face their survivorship without worrying about the financial ruin that may come with a recurrence.

Read more oncofertility coverage on the Affordable Care Act:

• Cancer and Health Care Reform
• New Changes in Health Care Reform Affect Oncofertility Patients

This week is the 10^th Annual National Young Adult Cancer Awareness Week, beginning April 2^nd and ending on April 8^th. In April 2003, National Young Adult Cancer Awareness Week was launched, and organizations and clinical institutions throughout North America began partnering to raise awareness about the unique needs of this age group. The young adult cancer population is defined as anyone who has been diagnosed with cancer between the ages of 15 to 39, and according to the National Cancer Institute (NCI), more than 70,000 young adults are diagnosed with cancer each year.

Young adults with cancer face unique concerns such as fertility, body image, cognitive function, long-term effects, education, insurance and employment. They also deal with distinct issues based on their age group, still reaching for their goals and dreams, which many older cancer patients have already achieved. For many young cancer patients, they envision themselves with a biological family at some point in their lives so fertility is a top concern for the young adult population.

In 2003, when National Young Adult Cancer Awareness Week was founded, there were few groups or organizations advocating for young adults with cancer. Today though, there is a large movement on behalf of this age group providing a number of services, programs, and networking opportunities including the Oncofertility Consortium, Stupid Cancer, and Imerman Angels among so many others.  There is something for everyone!

For more information on community resources for young adults with cancer, please visit the Patients page of our website. You will find support groups and organizations that cater to the specific needs of young adults diagnosed with cancer. In the meantime, help us bring awareness to the young adult cancer community by spreading the word about National Young Adult Cancer Awareness Week!

A few weeks ago we wrote a blog post on the upcoming Supreme Court case that addresses whether a child conceived after the death of a biological parent, such as one who underwent fertility preservation, is eligible for survivor benefits through the Social Security Administration. Though a handful of similar cases have popped up around the United States, the case in question refers to the twin children of Robert and Karen Capato. Robert Capato banked sperm prior to beginning esophageal cancer treatment shortly after his marriage to Karen in 1999. After his death, Karen used Robert’s banked sperm and gave birth to twins in 2003.  For a better overview of the case, read our first blog.

Recently, the Merits Briefs for the Petitioner, Michael Astrue, the Commissioner of Social Security, and the Respondent, Karen Capato, were submitted to the Supreme Court, and are avaialable here:

• Petitioner Brief
• Respondent Brief

Also, Oncofertility Consortium members provided information for one of the amicus (meaning “friend of the court”) briefs that were submitted. You can read that brief here:

• Brief of Amicus Curiae

The case will be argued on Monday, March 19th, 2012. We will keep you updated on the case as it progresses.

This March, the United States Supreme Court will hear oral arguments about its first case on oncofertility. The case involves the Capato couple, a husband and wife from Florida who dealt with Mr. Capato’s diagnosis of esophageal cancer.  Prior to beginning cancer treatment, the Capato’s learned that Mr. Capato’s chemotherapy could destroy his fertility and, as such, choose to preserve his fertility by banking sperm.  Despite the cancer treatment, Mr. Capato passed away from his disease. Mrs. Capato decided to continue their wishes as a couple and use Mr. Capato’s banked sperm to have their children through in vitro fertilization.

In 2003, 18 months after the death of her husband, Mrs. Capato gave birth to twins. As a widowed mother of twins, Mrs. Capato applied for Social Security survivors’ benefits. According to the Social Security Administration website, these benefits are intended to help the family of a worker who passes away and that 98 of every 100 children are eligible for benefits if a working parent dies.

However, Mrs. Capato’s application for her children to receive survivors’ benefits was denied. According to the Social Security Administration, the Capato twins are not actually Mr. Capato’s children since they were conceived after his death. This first decision was based, in part, on a Florida law that states that a child cannot receive inheritance from a parent who was dead at the time of conception. Mrs. Capato appealed this decision twice and was denied both times. Finally, the Third Circuit decided on the Capato twins’ behalf stating that the term “child” refers to the biological offspring of Mr. Capato, which they are.

The case that is going to the Supreme Court is called Astrue v. Capato as the Social Security Administration, is commissioned by Michael J. Astrue. Social Security Administration has a policy of denying survivor benefits when a child is conceived after a parent’s death and they are asking for guidance for the court on when to decide when these children should be beneficiaries.  We look forward to hearing more about this case in the next few months and will keep our readers updated. More insights into the legal aspects of oncofertility are available from some of the researchers at the Oncofertility Consortium:

• Medical hope, legal pitfalls: Potential legal issues in the emerging field of oncofertility by Gregory Dolin, MD, JD; Dorothy E. Roberts, JD; Lina M. Rodriguez, Teresa K. Woodruff, PhD
• Domestic and International Surrogacy Laws: Implications for Cancer Survivors by Kiran Sreenivas and Lisa Campo-Engelstein, PhD

In the next few weeks, the University of Illinois at Chicago (UIC) will be hosting an exciting new Grand Rounds session with Oncofertility Consortium  member, Dr. Jennifer Hirshfeld-Cytron, as the guest speaker.  “Legal and Ethical Implications of Fertility Preservation: A Case Based Approach,” will take a closer look at the ethics behind oncofertility on February 8th from 12-1pm at UIC.

Dr. Hirshfeld-Cytron will begin by discussing the various fertility preservation options patients have based on their diagnosis and cancer treatment plan. She will also discuss how patient care is handled collaboratively in this burgeoning new field. Much of the success in a multidisciplinary field is based on communication and how effectively teams work together. The Oncofertility Consortium can be seen as a model for team science through its ability to bridge the gap between clinicians, researchers, and the social sciences.

Finally, Dr. Hirshfeld-Cytron will discuss current literature related to the clinical, legal, and ethical implications of fertility preservation strategies in breast cancer, ovarian germ cell cancer and pediatric patient populations.  Read Dr. Hirshfeld-Cytron’s recently published a paper with Drs. Gracia and Woodruff entitled, Nonmalignant Diseases and Treatments Associated with Primary Ovarian Failure: An Expanded Role for Fertility Preservation.  A panel discussion will follow with  clinicians and scholars  from obstetrics, gynecology, pediatrics, law, and hematology-oncology.  For more information or attend this Grand Rounds, contact L. Anderson-Shaw at 312.413.3805.  We hope to see you there!

Cancer and Careers is an organization dedicated to empowering and educating people with cancer to thrive in their workplace by providing expert advice, interactive tools and educational events. Through their comprehensive website, free publications, career coaching, and a series of support groups and educational seminars for employees with cancer and their healthcare providers and coworkers, Cancer and Careers strives to eliminate fear and uncertainty for working people with cancer.  Basically, they’re a fantastic resource for cancer patients who also have a J-O-B.

Well, they’re at it again providing another great resource, this time for healthcare providers, to learn how to address the questions and concerns patients have with regard to working through cancer treatment. On October 20th and again on November 17th, Cancer and Careers will be hosting a free webinar as part of their Educational Series for Healthcare Professionals. The webinars aim to educate providers on the many ways to counsel patients concerned about the complications of working while undergoing cancer treatment.

Re-entering the workforce after illness-related absences is the topic of the October 20^th webinar. The speakers for this program will be Laura Mosiello LCSW-R, Oncology Social Worker and Consultant, and Julie Jansen, Executive and Career Coach and Author, discussing how to make the transition from treatment to trade. On November 17th, Cancer and Careers will tackle legal and insurance issues to consider after diagnosis. Joanna L. Morales, Esq., Director, Cancer Legal Resource Center, will be the speaker for this program making sure you understand the protections provided to cancer patients.

Cancer treatment is expensive and unfortunately for many patients, they don’t have the option to take a paid sabbatical from their jobs.  Someone’s got to pay the bills, and it’s usually the patient so sign-up and learn the right things to say to a patient facing a cancer diagnosis AND a mortgage payment (or student loans, rent, car payment, or any financial responsibility that can’t be sidelined by cancer). Ultimately, giving a patient sound advice and a platform to work from is part of creating a successful treatment plan.  They’ll have concerns; you’ll have some solid advice to offer and a direction to point them in.

To take part in one or both of these informative and free webinars, visit www.cancerandcareers.org. All the information you need is there, including the details on each webinar and how to register.  We hope you can join!

Are you a cancer survivor? Help oncofertility researchers study and prevent treatment-induced fertility loss by joining the FIRST online fertility registry for cancer survivors!

This past year, the Oncofertility Consortium partnered up with the Cancer Legal Resource Center (CLRC) for their Cancer Rights Conference series, which just wrapped up the second installment in the three-part series in Washington D.C. Now, believe it or not, the final installment of the conference series is fast approaching so if you haven’t participated yet, it’s time to get involved! Join us on October 21^st, in Ann Arbor, MI, for this informative and free, one-day event. Our goal is to empower attendees to better advocate for themselves and share their knowledge with those who most need access to information and resources on cancer-related legal issues.

As always, CLRC will provide patients, survivors, caregivers, advocates, navigators, health care professionals, and attorneys with valuable information about cancer-related legal issues, including: employment & taking time off work, health, disability and life insurance options, access to health care, insurance navigation and appeals, understanding health care reform, cancer community resources, genetics and the law, legislative advocacy, fertility preservation and education rights of children and young adults with cancer. Members of CLRC’s professional network are comprised of attorneys, insurance agents, and accountants able to answer a variety of legal concerns.

FREE CLEs will be offered to eligible attorneys in attendance and CEUs will be offered to social workers and nurses. Please visit www.CancerRightsConference.org to register and/or for more information. The 2012 locations will be Los Angeles, Chicago, Houston, and Boston.  Dates and exact agendas have not been determined thus far, but you can visit CLRC’s website to register or find more information.

If for some reason you are unable to attend this conference, but need to speak with a legal professional regarding a cancer-related legal issue, CLRC provides a toll-free telephone assistance line (866-THE-CLRC). Callers can receive free and confidential information about relevant laws and resources for their particular situation.