Insurance Coverage for Fertility Preservation

978-1-4614-8234-5 (1)Chapter 14 of Oncofertility Communication: Sharing Information and Building Relationships across Disciplines addresses an extremely important issue in healthcare, insurance coverage.  The authors, Dr. Laxmi Kondapalli and Alice Crisci, wrote Incorporating Insurance Education into the Fertility Preservation Process to outline strategies that may facilitate access to fertility preservation services for patients.

An important component to ensure insurance coverage is the referral to an oncofertility specialist.  This allows patients the opportunity to fully understand the endocrine impact from their specific cancer treatment and all the potential associated side effects including menstrual irregularities, sub-fertility and infertility, sexual dysfunction, metabolic disturbances, cardiovascular and bone health.  Providers should determine what type of pre-authorization is required for the specific insurance companies.  This information can typically be found on their web site.  From there, providers must use the appropriate diagnosis codes for the visits.   For oncofertility patients, it is essential to use the cancer diagnosis as the primary diagnosis code for the consultation.  Beyond that, special V codes for fertility preservation have been developed and are billable medical codes that can be used on reimbursement claims.  Often, these billing measures are coupled with a Letter of Medical Necessity.

Letters of Medical Necessity are used by insurance companies to review benefits coverage and usually include patient name and date of birth, insurance carrier name and patient identification number, clinical diagnosis and ICD code, cancer treatment plan, side effects of treatment plan associated with reproductive health, proposed ICD-10 codes and associated V-codes that you are requesting coverage, case for coverage, physician signature, and contact details.  Chapter 14 outlines, in detail, a list of factors that can be included in the Letter of Medical Necessity.  Read through the chapter for the full list, but an example is guidelines from professional organizations such as the American Society of Clinical Oncology or American Society of Reproductive Medicine.

As we’re all aware of, the journey to insurance coverage can often include denial and the start of an appeal process.  The Affordable Care Act ensures a patient’s right to appeal health insurance decisions, including asking insurers to reconsider its decision to deny payment for a service or treatment.  Patients typically have to navigate the appeal process independently with the support of the Letter of Medical Necessity from their provider.  Patients can also submit a letter of appeal for fertility preservation on their own behalf and the Oncofertility Consortium has appeal letter templates available on our website.

Unfortunately, many states across the country  do not require insurance coverage for infertility treatment for people who may become infertile as a result of cancer or medical treatments.  While legislature has been introduced in a number of states to expand existing fertility coverage to cover infertility caused by cancer treatment, our work is just beginning.  Advocacy groups, such as the Livestrong Foundation and the Cancer Legal Resource Center, are actively collaborating with key legislators to address this issue and the Oncofertility Consortium is proud to support their efforts.

AYA Twitter Chat TODAY 12:30pm CST (#YACancer)

Screen Shot 2014-03-28 at 9.32.40 AMRecently, Mashable featured Jenna Benn in a wonderful article: Wedding, Career, Chemo: When Cancer Derails the Millennial Dream.  Jenna Benn is a patient of the Robert H. Lurie Comprehensive Cancer Center at and a wonderful friend and supporter of the Oncofertility Consortium.

Due to the interest and response to her article, Mashable has organized an Adolescent Young Adult Twitter chat today, March 28th from 12:30-1:30pm central time.  Please use hashtag is #YACancer when responding to any questions generated during the chat or re-tweeting to your followers.

Please join us TODAY at 12:30-1:30pm CST for the Mashable AYA Twitter chat about cancer and the millennial generation!  

 

 

The Rest is History

image004Today, we are honored to have another patient guest blogger; long-term survivor Colleen Cira.  Read through her incredible story below and join the Robert H. Lurie Comprehensive Cancer Center this evening, March 25, from 5-8pm for “Drinks with Docs (& Healthcare Providers)” at Bridge House Tavern in Chicago, IL.  Witness the miraculous transformation of healthcare providers to mixologists!  Enjoy an evening of spirits and conversation while supporting the Adolescent and Young Adult Oncology (AYAO) Program at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University through the evening’s tips – so tip generously!

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The Rest is History

By: Colleen Cira

When I was 15 years old and first diagnosed with Hodgkin’s Lymphoma, I was no where near thinking about being a parent.  Despite that, I vividly remember being told by my oncologist that having chemotherapy and radiation may make it difficult to have children and I wouldn’t know if that was true or not until I started trying.  While I don’t remember having a significant emotional reaction to that information at the time, I know that when I approached my decision to have children with my husband just 3 years ago, I carried with me a tremendous amount of skepticism about my ability bear children because I am a cancer survivor.  Fast forward 18 years later and I have the most adorable, curious and sweetest little 19 month old I could ever dream of.  But he didn’t come easy.  
 
Just a few months into “trying” with no results, I knew in my bones that something was wrong and that the standard “wait a year” advice was not going to fly for me because of my history.  Thank God for the STAR program at Northwestern because they immediately put me in touch with Kristin Smith at Northwestern’s fertility clinic.  Within a matter of weeks, I learned that chemo and/or radiation had killed off practically all of my eggs, I was almost 100% infertile as a result and, as a result, the typical first line fertility treatments were not going to work for me.  My treatment team told me that we immediately needed to start preparing for intra-uterine insemination (IUI) because if IUI was not successful, they wanted to start IVF immediately – they didn’t know how big the window was between 97% to 100% infertile.
 
In a matter of a month, I began taking medication, giving myself two shots every day and going to the infertility clinic constantly.  I always joked with my friends and family that I would be better off renting a cot there ;)  To complicate the picture, the insurance that my husband and I had did not cover the treatments or procedures.  It was an exhausting time for my husband and myself, physically, emotionally and financially.  I was terrified about the possibility of the treatments not working…about not ever having the opportunity to be someone’s biological Mom.  What I feel so incredibly lucky to say is that there is a happy ending.  After one IUI attempt, I became pregnant with Lincoln and, as they say, the rest is history.
 
A small part of me feels silly even writing this because now I know so many people who have struggled to have children.  People who try for years, who cannot identify the cause for their infertility, who try procedure after procedure with no results.  It is with this perspective that I feel so incredibly blessed to have the luck we did with IUI and the beautiful baby boy it allowed us to create.

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A sincere thank you to Colleen for sharing her journey and we hope to see you all this evening at the “Drinks with Docs (& Healthcare Providers)” at Bridge House Tavern from 5-8pm.

Night of Humor & Healing

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On April 9, 2014, the Robert H. Lurie Comprehensive Cancer Center will host a “Night of Humor & Healing” for young adult cancer survivors ages 16-40 years old at the famed Second City Theater.  The evening will include dinner, drinks, networking, and a one-hour hilarious improv show followed by a presentation from four-time cancer survivor Glenn Rockowitz.  Glenn is a former improviser and Saturday Night Live writer who went on to publish a book about his experience battling cancer as a young adult.   Now he is the Executive Director for Change It Back, an organization that sets national standards for adolescent and young adult oncology (AYAO) care. 

The Lurie Cancer Center understands that young adult cancer survivors face unique issues and may need different care and information than other age groups.  Our “Night of Humor & Healing” is one of many programs and services offered to young adults.  Learn more about the event and get your tickets today at http://cancer.northwestern.edu/humor/index.cfm.

The Oncofertility Consortium is proud to support the Night of Humor & Healing and urge all of you to look through the information provided through the Robert H. Lurie Comprehensive Cancer Center website and attend the event if possible.  It’s sure to be an invigorating and entertaining evening!

Evidence-Based Medicine in Oncofertility

Educating Providers on Evidence-Based Medical Guidelines is a chapter of Oncofertility Communication: Sharing Information and Building Relationships across Disciplines where the authors, Lauren N.C. Johnson and Dr. Clarisa R. Gracia, outline previous medical paradigms and how they have changed to incorporate new evidence-based medical guidelines in fertility preservation and oncofertility.

Screen Shot 2014-03-19 at 10.32.01 AMThe old paradigm of medical practice relied heavily on individual clinical experiences and the knowledge of pathophysiology.  Based on this, physicians would refer to text books and senior colleagues when faced with a difficult patient situation.  As such, many patient care decisions were influenced by provider bias rather than objective data.  In the late twentieth century, there was a paradigm-shift to focus on evidence-based medicine which highlighted the critical importance of objective data in medical decisions.  Evidence-based medicine (EBM), as a whole, is a tool for solving clinical questions.  The original definition of EBM was “the conscientious, explicit, and judicious use of current best evidence in making decisions about the care of individual patients” and was later amended to include the critical role of the patient in health care decisions.  Now, EBM is “the integration of the best available research evidence with clinical expertise and patient values” which allows for the best clinical decisions relating to patient care.

In an effort to generate appropriate information, clinicians focus on the “PICO” model: P stands for Patient, Problem, or Population;  I stands for Intervention; C stands for Comparison; O stands for Outcome.  These four areas allow for clinicians to focus their questions in a logical way that allows for quicker literature searches and data gathering.  Beyond the PICO model, grading systems were put in place to help medical professionals evaluate the quality of the evidence in a particular study or set of guidelines through grades of “good, fair, or poor”.  Even further beyond these systems, many clinicians refer to the Strength-of-Recommendation Taxonomy (SORT) system which focuses mainly on patient-centered outcomes, quality of life, and symptom improvement.  Recently, researchers have expressed increased interest in the impact of cancer therapies on fertility as more cancer patients become long-term survivors.  As Oncofertility has garnered more attention and interest, the quality of data relating to fertility preservation has drastically improved from simple case studies to randomized controlled trials.  Based on the quality of the data available, the American Society of Reproductive Medicine (ASRM) reclassified oocyte cryopreservation to be an established technique. This is a prime example of how EBM can transform clinical care.

The Oncofertility Consortium relies heavily on EBM and is dedicated to providing clinicians with access to educational resources through various avenues.  The Consortium hosts an annual conference with didactic sessions as well as hands-on, small-group training courses, frequent ‘Virtual Grand Rounds‘ and online access to currently published research studies.  Practice guidelines for fertility preservation in cancer patients have been published by several professional societies including the American Society for Clinical Oncology (ASCO), ASRM, and the British Fertility Society.  Some organizations, such as ASCO, ASRM, and The Endocrine Society, even offer Continuing Medical Education credits (CME) for online training modules.

As Oncofertility continues to rapidly evolve, knowledge of Evidence Based Medicine, and access to high-quality, patient-oriented literature, will allow physicians to consistently offer excellent care to patients seeking fertility preservation.  The Oncofertility Consortium will continue to share resources with our large network and promote the role of EBM in fertility preservation through our Annual Conference, Virtual Grand Rounds, among many other channels.

Preserving Oocyte Reserve

Today we welcome Dr. So-Youn Kim from Dr. Woodruff’s Lab at Northwestern University as our guest blogger.  Dr. Kim will review a recent article published by Dr. John C. Schimenti in Science 2014.

ONE MORE STEP TOWARDS PRESERVING OOCYTE RESERVE

By: So-Youn Kim, PhD

According to a paper published by Dr. John C. Schimenti and colleagues in Science in 2014, Reversal of Female Infertility by Chk2 Ablation Reveals the Oocyte DNA Damage Checkpoint Pathway, mice that have knock out checkpoint kinase 2 (chek2-/- or chk2-/-) are protected against radiation damage to oocytes (1). These Chk2-deficient female mice do not have fertility problems.  Radiation did not eliminate primordial follicles in Chk2-deficient female ovaries, compared with that of wild-type animals, and Chk2-deficient mice gave birth to an average litter size. This gives researchers further hope that oocytes can be protected during chemo- or radiation therapy in cancer patients.

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Depletion of p63-positive primordial follicles by IR is CHK2-dependent. Ovaries were cultured 7 days after irradiation. Scale bars, 100 μm. MVH marks oocytes. (Insets) Ovary cortical regions containing primordial follicles (Schimenti J.C. et al, Science, 2014)

Checkpoint kinase 2 (CHK2) is a protein component of the meiotic DNA damage checkpoint that plays a role in DNA repair. It is a downstream molecule of ataxia telangiectasia mutated (ATM), which is activated to DNA double strand breaks (DSBs), or ataxia telangiectasia and Rad3 related (ATR; FRP1), which is responsive mainly to single-stranded DNA breaks (2,3). CHK2 may transfer the signal to downstream molecules, p63/p53 (/p73), to decide the destiny of cells. Schimenti’s team showed that irradiated Chk2-/- mice did not phosphorylate TAp63, a protein that has known as a guardian in oocyte to protect female germline (4). The team showed that CHK2 signals to both p53 and TAp63 when oocytes get DSBs by showing that irradiated p53-/- TAp63-/- has similar protection of Chk2-/- female. Therefore, if the repair systems by CHK2 fail to fix DNA damage, it will induce the signaling pathway of p53/TAp63, causing the depletion of ovarian follicle reserve.

Women who are treated with chemo- or radiation therapy are faced with the depletion of ovarian reserve, causing premature ovarian failure and destruction of the endocrine system. Chemo- or radiation therapy is especially detrimental to women who have not yet given birth, but hope to have children later in their life.

Many groups have done research to protect oocytes against chemo- and radiation therapy by figuring out the key target molecules and effective inhibitors. There are several candidate inhibitors so far such as GnRH analogues (5), S1P (6), AS101 (7), and Imatinib (8). But there is still controversy as to how to protect oocytes against chemo- and radiation therapy. None of these have yet been tested in mice to kill cancer cells while protecting the ovarian reserve. If CHK2 is a key molecule in the signaling pathway of oocyte death as Schimenti’s team proposed, the use of CHK2 inhibitor could be an ideal way to protect oocytes against apoptotic pathway by radiation and give time to repair DNA damage in oocytes while killing cancer cells.

We cannot determine the healthiness of oocytes undergoing these treatments although the inhibitors could prevent the death of oocytes during chemo- and radiation therapy in cancer patients. Although the radiated oocytes from Chk2-/- mice produced healthy pups, the team would need to pursue much deeper research to study the genomes of the pups to determine if they contain DNA mutations when CHK2 inhibitors are used. While more research needs to be done, this is another step towards fertility preservation in cancer patients.

References:

  1. Bolcun-Filas E, Rinaldi VD, White ME, Schimenti JC. Reversal of female infertility by Chk2 ablation reveals the oocyte DNA damage checkpoint pathway. Science. 2014;343(6170):533-536.
  2. Wang XQ, Redpath JL, Fan ST, Stanbridge EJ. ATR dependent activation of Chk2. Journal of cellular physiology. 2006;208(3):613-619.
  3. Hirao A, Cheung A, Duncan G, Girard PM, Elia AJ, Wakeham A, Okada H, Sarkissian T, Wong JA, Sakai T, De Stanchina E, Bristow RG, Suda T, Lowe SW, Jeggo PA, Elledge SJ, Mak TW. Chk2 is a tumor suppressor that regulates apoptosis in both an ataxia telangiectasia mutated (ATM)-dependent and an ATM-independent manner. Molecular and cellular biology. 2002;22(18):6521-6532.
  4. Suh EK, Yang A, Kettenbach A, Bamberger C, Michaelis AH, Zhu Z, Elvin JA, Bronson RT, Crum CP, McKeon F. p63 protects the female germ line during meiotic arrest. Nature. 2006;444(7119):624-628.
  5. Osborne SE, Detti L. GnRH-analogues for ovarian protection in childhood cancer patients: how adult hypotheses are relevant in prepubertal females. Current drug targets. 2013;14(8):856-863.
  6. Zelinski MB, Murphy MK, Lawson MS, Jurisicova A, Pau KY, Toscano NP, Jacob DS, Fanton JK, Casper RF, Dertinger SD, Tilly JL. In vivo delivery of FTY720 prevents radiation-induced ovarian failure and infertility in adult female nonhuman primates. Fertility and sterility. 2011;95(4):1440-1445 e1441-1447.
  7. Kalich-Philosoph L, Roness H, Carmely A, Fishel-Bartal M, Ligumsky H, Paglin S, Wolf I, Kanety H, Sredni B, Meirow D. Cyclophosphamide triggers follicle activation and “burnout”; AS101 prevents follicle loss and preserves fertility. Science translational medicine. 2013;5(185):185ra162.
  8. Gonfloni S, Di Tella L, Caldarola S, Cannata SM, Klinger FG, Di Bartolomeo C, Mattei M, Candi E, De Felici M, Melino G, Cesareni G. Inhibition of the c-Abl-TAp63 pathway protects mouse oocytes from chemotherapy-induced death. Nature medicine. 2009;15(10):1179-1185.

 

Communication: From Professionals to the Public

Screen Shot 2014-02-18 at 10.23.36 AMWe live in a digital age where more information is available at our fingertips than ever before.  We now have access to information in a matter of seconds that used to take weeks to locate through time intensive literature reviews at the library.  Chapter 12 of Oncofertility Communication: Sharing Information and Building Relationships across Disciplines is devoted to the unique set of challenges presented through these new and varying methods of communication.  In this chapter, Oncofertility Communication Tools for Professionals and the Public, authors Stefani Foster LaBrecque, Harlan Wallach, and Kate E. Waimey identify the many communication platforms utilized in Oncofertility.  Because Oncofertility, by nature, requires reaching multiple disciplines and stakeholders, communication strategies must be geared towards everyone from high level scientists to patients and their families.

Communication tools range from primary and review articles in scientific journals to social media; each end of the spectrum presenting a differing set of hurdles.  For example, academic publications have credibility with funding sources and in scholarly settings but often reach a small group of already engaged stakeholders.  On the other hand, social media reaches a very large audience but credibility is often in question as the information distributed is not subjected to a rigorous review process.  Thankfully, a number of communication tools have been developed to bridge the gap.

Professional websites can be a wonderful resource for clinicians and patients searching for information.  The Oncofertility Consortium website has different sections specifically geared towards researchers, clinicians, and patients and are modified routinely to keep up with technology and the needs of our audience.  Websites can be used to host archived information from previous presentations, publications, and procedures as well as broadcast new information.  A unique aspect of the Oncofertility Consortium website is our interactive National Physicians Cooperative map which identifies collaborative practices with ‘pins’ on the map.  Providers can view the map and see what hospital systems they can refer patients to and patients can access this same information to find the best fit for them.  In conjunction with the Oncofertility Consortium website, patients and providers are encouraged to use the Fertility Preservation Patient Navigator website which is instrumental in connecting patients with fertility preservation providers.

Moving past websites, Chapter 12 discusses the new rolScreen Shot 2014-02-18 at 10.32.48 AMe of virtual meetings in the communication toolbox.  Current mechanisms for virtual meetings are Vidyo videoconferencing which allows for face-to-face audio, visual, and data-sharing and Adobe Connect, where a single presenter broadcasts video and data slides and viewers ask text-based questions that can be answered in real time.  These newer technologies have really helped to bridge the gap between clinicians and the public as well as broadcast clinical scenarios for input from colleagues across the globe.  While these technologies will never replace the benefit of in-person communication, it is a way to foster those relationships when distance and schedules conflict.

The next generation of technology involves the utilization of smartphones.  People are constantly connected to their smartphones and we are identifying ways to reach patients through this ever-present device.  The Oncofertility Consortium led the charge with their iSaveFertility app for the iPhone which provides clinicians the ability to view educational pocket guides about fertility preservation in men, women, and children and email applicable information directly to patients from the app.  A web-version was launched in conjunction in the app to make consistent information available to non-iPhone users and those wanting to view information on their desktop.  The next step is upgrading the app for use on newer iPhone platforms and having a counterpart available for android users.  Again, technology keeps evolving and we need to keep up!

The best way for technology to educate patients and their families is through Public-Facing Web sites.  These sites house short videos of patients, scientists, and health care providers, and include animations which are especially useful for children or individuals with poor literacy.  One example of a public-facing website is MyOncofertility.  MyOncofertility is a patient education website available through the Oncofertility Consortium which provides concise information to patients and their families regarding treatment options and available resources.  The Oncofertility Consortium receives feedback from patients and can edit material based on what is desired by the public.  From these comments, the Consortium is able to locate new avenues to reach the public.  The most applicable one being social media.  To complement the information provided on public-facing websites, the Oncofertility Consortium maintains a social media presence through Facebook, Twitter, YouTube, and the Oncofertility Consortium blog.  With these tools, it is easy to keep a large community informed of upcoming events, existing tools available through the Consortium, and support our wide range of collaborators.

Moving forward the Oncofertility Consortium is dedicated to strengthening the survivor-patient-provider connection through both updated technology mechanisms and in person communication.  This will be done through our established web presence (websites and social media) as well as discussions with our national and global partners to receive input on current experiments and procedures.  Continue reading Oncofertility Communication: Sharing Information and Building Relationships across Disciplines and tour our Oncofertility Consortium resources for more information.

 

What is Shared Decision Making?

Screen Shot 2014-02-11 at 2.24.57 PMOncofertility Communication: Sharing Information and Building Bridges across Disciplines is divided into two parts.  Part I is Communicating with Patients and Their Families and outlined in Chapters 1-10.  Part II, Communicating with Healthcare Professionals, Stakeholders and the Public starts with Chapter 11, An Interprofessional Approach to Shared Decision Making: What it Means and Where Next.  The authors France Légaré and Dawn Stacey delve into the intricacies of an interprofessional healthcare team approach and what it means for patients who wish to be engaged in the decision making process.

An interprofessional approach is a process by which two or more professionals collaborate to provide integrated and cohesive care to address the needs of their patient population.  It has the potential to link multiple professionals (physicians, nurses, social workers, physical therapists, etc.) with patients and families and help eliminate communication and information gaps in the healthcare system.  Oncofertility is a field whose success relies heavily on interprofessional decision making.  Oncologists, reproductive endocrinologists, nurses, and psychologists work together to provide quality care in a timely manner.  While many advances have been made,  clinical decision-making processes still need to be improved to involve patients and their wishes within the framework.  Additionally, more work needs to be done to identify and implement conceptual models underlying interprofessional approaches to shared decision making and those already in place need to be validated in clinical settings.

The Oncofertility Consortium is a prime example of how interprofessional approaches can successfully drive patient care.  Our Fertility Preservation Patient Navigator helps to bridge the gap between clinicians and patients in a way that allows patients to feel empowered and involved in the decision making process!

Perspectives on Fertility

978-1-4614-8234-5 (1)Oncofertility Communication: Sharing Information and Building Relationships across Disciplines devoted an entire chapter to the communication strategies and issues faced by oncology providers.  Chapter 10 is entitled Fertility Communication to Cancer Patients: A Hematologist-Oncologist’s Perspective and is authored by Sara Barnato Giordano.  As cancer treatments have advanced, the percentage of survivors continue to grow.  Today, approximately 80% of adolescents and young adults given a cancer diagnosis will survive and be faced with a new set of challenges as long-term survivors.  Many studies have shown that young women have a number of concerns related to sexual health, infertility and menopausal symptoms and there is significant room for improvement in communication and counseling in this patient group.

The American Society of Clinical Oncology (ASCO) released guidelines in 2006 that suggested that oncologists should address the possibility of infertility with patients treated during their reproductive years and be prepared to discuss possible fertility preservation options.  They followed up these guidelines with a program, Quality Oncology Practice Initiative (QOPI) that established age-based parameters to provide guidance to oncologists when selecting available fertility preservation options to discuss with patients.  Surveys have indicated that oncologists are often wary of referring patients for fertility preservation consultation for fear of delaying treatment too long or assuming that their patients would not be interested in discussing fertility.  The ASCO guidelines were meant to be an impetus for implementing stronger fertility preservation programs but significant barriers still exist.

The author describes categories of barriers: health care system barriers, physician barriers, communication barriers, adolescent and young adult barriers, and parent barriers.  Each present their own set of unique challenges.  Health care system barriers demonstrate that while national guidelines have been disseminated and accepted, hospitals do not have procedures or policies in place that enforce the implementation of guidelines or designate which health care provider (physician, nurse, patient navigator, etc) are responsible for initiating the discussion.  This leads into the next barrier: physician barriers.  Physicians are often reluctant to endorse fertility preservation as they feel discussing infertility and fertility preservation options are neither appropriate nor an immediate clinical priority in light of a cancer diagnosis.  Beyond that, physicians are tasked with providing a large amount of information to patients in a short amount of time after their cancer diagnosis which is where the communication barrier is most evident.  Patients are flooded with information relating to diagnosis, treatment, side effects, and outcomes and the discussion of fertility preservation is often considered a lower priority.  In addition, adolescent and young adult barriers and parent barriers are often intertwined throughout the course of cancer diagnosis and discussion.  Discussion about fertility, such as sperm banking and ovarian stimulation, can be uncomfortable for adolescents or young adults and the process for fertility preservation can seem daunting in the face of a cancer diagnosis.  Parental barriers often relate to lack of knowledge about the emotional development and cognitive process of their child as well as varying religious or cultural values of the family.  Occasionally, the patient and the parent are at odds in their decisions and many physicians lack the tools necessary to effectively navigate the conversation.

With greater publicity around fertility preservation for cancer patients, more patients and parents are becoming their own advocate and requesting information and services for fertility preservation even if their physician does not offer it.  However, the responsibility for conveying information about fertility preservation to patients lies in the hands of the medical professionals.  The ASCO Guidelines and subsequent QOPI measures are mechanisms to improve communication and ease the referral process.  New methods of communication strategies between physicians, parents, and patients must be identified and assessed and applicable training should be available to medial professionals on how to discuss fertility preservation with patients and their families.

Discuss communication strategies and troubleshoot barriers within your own home institution and refer back to Chapter 10, Fertility Communication to Cancer Patients: A Hematologist-Oncologist’s Perspective for talking points and references. Additional  resources can be found on the Online Resources section or Patient Resources section of the Oncofertility Consortium website

 

Tomorrow is International Childhood Cancer Day

Screen Shot 2014-02-14 at 2.04.05 PMTomorrow, February 15, 2014, is International Childhood Cancer Day.  A day devoted to the strength, courage and resiliency of children with cancer and their families.  The International Society of Pediatric Oncology (SIOP) and the International Confederation of Childhood Cancer Parent Organizations (ICCCOI) represent pediatric oncologists and childhood cancer parents’ organizations from countries around the world coming together for a common goal.  Every year more than 250,000 children are diagnosed with cancer with 90,000 dying from the disease when 70% of all childhood cancers are curable!

Screen Shot 2014-02-14 at 2.03.28 PMWhile adult cancers have benefited from new targeted drug therapies, childhood cancer drug development has lagged behind and children are receiving very strong drug doses that have many long-term effects.  These long-term effects are especially worrisome to the Oncofertility Consortium as they often relate to future fertility of childhood cancer survivors.  These cancer drugs save the life of patients but often eliminate the possibility for patients to have biological children when they are adults.  Research needs to progress quickly with simultaneous goals of identifying a cure for childhood cancer and eliminating the long-term side effects of cancer therapy on survivors.  We look forward to a day when cancer is no longer a concern and will work tirelessly to help the efforts in any way we can!  In the meantime, patients and their families can access a wealth of information at the Fertility Preservation Patient Navigator and  Oncofertility Consortium websites.

 

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