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.

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

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

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

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

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.

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 2^nd, 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.

The month of November kicks off the sixth annual Movember fundraising campaign to raise vital awareness and funds for men’s health issues, specifically prostate and testicular cancer initiatives.  Every November, men are encouraged to grow out their moustaches for the entire month in support of men’s health. Last year, Movember raised over half a million dollars in Chicago alone and almost $300 million has been raised worldwide since 2003.

This year’s theme of Movember & Sons, reminds us how knowledge is shared and wisdom gets passed down from one generation to the next. This year Movember & Sons focuses on family and generational health — essentially, the knowledge transfer that happens from dad to son — and then, later in life, from son back to dad.

The Movember campaign goals are as follows:

Survivorship: To fund survivorship initiatives that provide information and support for men and their families affected by prostate and other male cancers that helps them make informed decisions and improves their quality of life, include information about fertility preservation.

Awareness and Education: To significantly increase the understanding of the health risk that men face and encourage men to act on that knowledge.

Prostate Cancer Research: To fund catalytic research and clinical trials infrastructure that leads to significantly improved diagnostic and prognostic tests and treatments to reduce the burden of prostate cancer.

Influencing Change in Men’s Health: To fund research that helps to inform health policy and knowledge translation that accelerates improved health outcomes for men.

The funds raised are directed to programs run directly by Movember and their men’s health partners, the Prostate Cancer Foundation and LIVESTRONG Foundation. Together, the three channels work together to ensure that Movember funds are supporting a broad range of innovative, world-class programs. For more information on these programs and other Movember initiatives, please visit the following websites: Prostate Cancer Foundation, LIVESTRONG Foundation, Awareness & Education, and Global Action Plan.

So start growing out those moustaches men, and if you’d like to learn more about your reproductive health after a cancer diagnosis, please visit out SaveMyFertility.org or visit our Virtual Patient Navigator.

More and more healthcare organizations, hospitals, and clinics are interested in learning about fertility preservation and how exactly an oncofertility program is developed. The Oncofertility Consortium holds a 1-day course entitled, Clinic 101, to teach health care providers the necessary steps involved in developing their own fertility preservation program or ways to strengthen their existing program. Nonetheless, we understand that not everyone can make it to Chicago for this course so a few of our Consortium members put together a little “how-to” to help you get started.  In “Setting Up an Oncofertility Program,” in Oncofertility Medical Practice: Clinical Issues and Implementation, authors H. Irene Su, Lindsay Ray, and R. Jeffrey Chang, provide a first hand account of what is needed to build an oncofertility program through their experience developing a program at the University of California, San Diego (UCSD).

First, starting an oncofertility team requires engaging a medical team with various clinical backgrounds: oncologist, reproductive endocrinologist, urologist, patient navigator/nurse, anesthesiologist, supportive oncology, etc., to commit to communicating and working together from the onset of diagnosis through survivorship. Often, the oncologist and reproductive endocrinologist are the ones to assemble the oncofertility team, in part because they are the clinicians involved in the immediate diagnosis and aftermath of a cancer diagnosis in a pediatric, adolescent, or young adult cancer patient.   Collective expertise in managing oncofertility patients is crucial to a successful treatment plan.

Another important aspect of building an oncofertility program is to establish a marketing/communications team to help educate health care providers and medical practices’ about fertility preservation.  It is also imperative for the marketing team to reach the local pediatric and young adult cancer community to encourage young cancer patients and their caregivers to be proactive in their cancer care so they can make informed decisions about their course of treatment.  Websites, grand rounds, exhibits, educational materials, and resources all help to facilitate effective outreach efforts.

Finally, after a clinical team has been established and outreach and marketing efforts put in place, an oncofertility program needs a financial counselor to assist patients in locating resources to defray the cost of fertility preservation. At this time, most fertility preservation treatments are not covered by insurance. This can have a strong influence on a cancer patient’s decision to pursue oncofertility services; however, knowledgeable financial counselors can help direct patients to the appropriate financial assistance programs and help negotiate oncofertility packages in their own institutions.

To learn more about building a fertility preservation program, please read, “Setting Up an Oncofertility Program,” in Oncofertility Medical Practice: Clinical Issues and Implementation.

Yesterday we posted a blog about the 36^th annual APHON (Association of Pediatric Hematology/Oncology Nurses) Conference being held right now in Pittsburgh, PA.  It’s an exciting time for us because not only do we have a member of the Oncofertility Consortium presenting on fertility perseveration at the conference (Barbara Lockart, MSN, RN, CPNP, CPON), but also because APHON has recently released a position statement entitled, Fertility Preservation for Pediatric and Adolescent Young Adult (AYA) Cancer Patients. The strides that have been made since the Oncofertility Consortium’s inception in 2007 are truly on display here and we couldn’t be more excited!

Nurses are often the thread connecting young cancer patients and their families to pertinent information that can sometimes be overlooked in the urgency of a cancer diagnosis and subsequent treatment planning process.  As studies have shown, fertility issues and options are often not addressed at diagnosis for several reasons (age of the patient, diagnosis, gaps in provider knowledge, etc.); however, several studies report childhood and AYA cancer patients are interested in learning about fertility preservation options, including those that are experimental.

It is APHON’s position that, “discussions regarding fertility preservation occur with all patients and families as early in the treatment trajectory as possible (prior to treatment whenever possible). These discussions should continue throughout treatment and follow-up care as patients continue to grow and develop.” Currently, many pediatric facilities do not have the resources available to offer fertility preservation in their institutions, but they have the option of partnering with reproductive or adult centers that provide fertility preservation services. Collaboration between centers is vital for a successful treatment experience for patients, families, and their healthcare team. The Oncofertility Consortium provides both patients and health care professionals with resources for locating established fertility preservation centers, as well as providing a national fertility hotline, FERTLINE, answered by a Fertility Preservation Patient Navigator who can provide you with additional information.

In addition to that, pediatric oncology nurses’ expertise may be needed to provide adult healthcare providers with information about the unique psychosocial and developmental needs of childhood and AYA oncology patients and their families. They can also be a great resource for patients and families who may not have enough information independently to inquire about specific issues such as cost, insurance coverage, success rates, and storage concerns.

As evidenced by their position statement, APHON is supporting the Oncofertility Consortium’s quest to ensure that all patients, providers, and caregivers have the ability to make informed decisions regarding fertility preservation in the face of a cancer diagnosis. Please take a moment to read, Fertility Preservation for Pediatric and Adolescent Young Adult (AYA) Cancer Patients, and learn more about fertility preservation resources nationwide.

As you may have heard us mention a time or two before, the 3^rd book in the oncofertility series, Oncofertility Medical Practice: Clinical Issues and Implementation, was just released on Amazon.com and is available for purchase. Besides just letting our readers know that important piece of information, we’d also like to give you an inside look into the wealth of knowledge this informative new book contains. To begin, let’s take a look into chapter 13, “Patient Navigation and Coordination of Care for the Oncofertility Patient: A Practical Guide,” by Kristin Smith, Brenda Efymow, and Clarisa Gracia to see the true role of patient navigators in oncofertility management.

Adolescents and young adults facing a new cancer diagnosis need immediate access to oncofertility care in order to maximize their fertility preservation options. In order to do this, patient navigators act as the go-between among a variety of health care providers including oncologists, and reproductive specialists, during a highly stressful and complex time following a cancer diagnosis. According to the authors, “Within the health care setting, the patient navigator bridges institutional and disciplinary boundaries so that cancer patients are able to receive timely information regarding fertility preservation options.” Once cancer patients receive this pertinent information, they are better able to make informed decisions about their course of treatment.

Cancer patients making the decision to preserve their fertility have a limited timeframe to process and make this decision that individuals not facing a cancer diagnosis often do not have to navigate. They do not have the time to flesh out their decision and/or save up for the expensive procedure.  According to the authors, “The average out-of-pocket cost for invitro fertilization (IVF) in the United states is $12,500.” A fertility preservation patient navigator can assist patients by directing them to programs established to defray the cost of fertility preservation, or draft appeal letters to insurance companies, which can result in a savings of thousands of dollars.

Finally, patient navigators act as the “experts” in fertility so that oncologists don’t have to be.  They serve not only the patient, but also the provider, making a complex topic more accessible to healthcare professionals who may be uncomfortable with their level of knowledge in oncofertility, increasing the likelihood that they will not refer patients for consultation.  At Northwestern, Fertility Preservation Patient Navigator Kristin Smith works closely with healthcare professionals, shepherding patients between specialists in oncology, urology, and reproductive endocrinology.  Kristin is also the face of the new Fertility Preservation Patient Navigator website, designed to provide virtual assistance to young patients wishing to learn about their reproductive options in the midst of a cancer diagnosis. To learn more about this website, read our blog, “Introducing the Virtual Patient Navigator for Fertility Preservation,” by Kate Waimey Timmerman, or click here to go directly to the website.

To learn more about the Patient Navigators’ role in fertility perseveration, read, “Patient Navigation and Coordination of Care for the Oncofertility Patient: A Practical Guide,” in Oncofertility Medical Practice: Clinical Issues and Implementation.

The Northwestern Community (university, hospital, faculty foundation, etc.) is extremely comprehensive, and offers so much in the realm of cancer care. We like to think that we’re a one stop shop for anyone dealing with a cancer diagnosis – taking care of patients’ physical, mental, and emotional needs not only while in treatment, but also in survivorship. One of the great services that Northwestern provides is a forum for patients, caregivers, and survivors of breast cancer to meet and discuss treatment options, symptom management, exercise & nutrition and survivorship, in a supportive environment.

The Lynn Sage Breast Cancer Town Hall Meeting is a free event that takes place once a year for individuals who are looking for information on moving forward after breast cancer. If you have questions about treatment options, nutrition and physical activity, family history and supportive oncology services, this is a great place for you to come and learn, interact, and take in all the information that you need. This interactive discussion about breakthroughs in breast cancer is a unique opportunity to have any of your cancer-related questions answered by experts at Northwestern’s Lurie Cancer Center. Participants also can visit the extensive range of exhibitors to discover community breast cancer resources, and learn more about local and national organizations providing support. Some panel topics are:

• Nora Hansen, MD – Understanding Breast Cancer Surgery Options
• Virginia Kaklamani, MD, DSc – Cancer Risk & Genetics
• Virginia Nothnagel, MS, RD, LDN – Eating Well & Staying Active
• Timothy Pearman, PhD – Facing Forward: Life after Cancer

The Lynn Sage Breast Cancer Town Hall Meeting takes place Sunday, September 30^th from 1-4pm CDT, and is a free event open to the public. Learn more and register for the Lynn Sage Breast Cancer Town Hall Meeting here.

Recently, one of our friends and cancer advocates, Jonny Imerman, was featured on CNN Health, in an article entitled “Pairing ‘Angels’ with Cancer Patients,” showcasing the organization he began 10 years ago, Imerman Angels. Imerman Angels is an organization founded in 2003 that carefully matches and individually pairs a person touched by cancer (a cancer fighter or survivor) with someone who has fought and survived the same type of cancer (a Mentor Angel). Caregivers (spouses, parents, children and other family and friends of fighters) also receive 1-on-1 connections with other caregivers and survivors. These 1-on-1 relationships inspire hope and offer the chance to ask personal questions and receive support from someone who is uniquely familiar with their experience.

In 2001, at 26 years old, Imerman was diagnosed with testicular cancer. He underwent an aggressive chemotherapy regime that lasted 5 months only to have the cancer return one year later, this time in his spine. Throughout his cancer treatment, he would walk the halls of the hospital and talk with other young cancer survivors, hoping to make a connection through their shared experience, and offer hope and support. Imerman says, “It was instant friendship. You’re not talking surface level. You’re talking about life and death. My goal was to get in there and motivate patients so that they wanted to jump out of their chemo bed and literally start swinging at this thing.”

Once Imerman was deemed “cancer free,” he was motivated to start engaging the young adult cancer community, and connect patients with other patients or survivors experiencing a similar health crisis. Imerman saw the value in providing a service enabling a cancer fighter to talk to a cancer survivor, who not only had beaten the same type of cancer, but who also was the same age and gender as the fighter. He started reaching out to doctors and hospitals and was referred to other cancer survivors. He collected information from patients, networked with other patients and survivors, and became a cancer matchmaker.

Today, a decade later, Imerman Angels has a database of more than 4,000 survivor mentors. The group tries to connect people living in the same city who can meet in person, but its database also extends overseas, and some pairs communicate via phone and Skype. On average, the group creates five to seven pairs a day and has made more than 8,000 matches in more than 65 countries.

Although Imerman Angels works with all age groups, the majority of their “angels” are between 18-40, a demographic often underrepresented in the cancer care community. According to Jenna Benn, a young woman diagnosed with a rare form of lymphoma when she was 29, “Imerman Angels is incredible in the sense that they’re able to pair you up with someone that looks just like you and that gets it and that can tell you it’s going to be OK. All of a sudden, your reality doesn’t seem so strange.”

Read more about Jonny Imerman and Imerman Angels at CNN Health in, “Pairing ‘Angels’ with Cancer Patients.”