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.

Around 10% of all people diagnosed with cancer are in their reproductive or pre-reproductive years (under age 45). This means that, each year, approximately 133,000 women, men, and children who are diagnosed with cancer are at risk for infertility due to the very treatments (e.g. chemotherapy, radiation, and surgery) that can save their lives. Given improved survivorship rates, fertility concerns have emerged as an important quality of life issue to cancer survivors and their families. Oncofertility, a new and interdisciplinary field at the intersection of cancer and fertility, is working to address potential infertility as a result of cancer treatment.

Although more cancer patients are being offered and are using fertility preservation technology (FPT), its cost and the lack of insurance coverage for it are often the major reasons given by oncologists for why they do not provide information on fertility preservation options to their patients. One method of ensuring people in their reproductive years or children who are diagnosed with cancer have access to and insurance coverage for FPT is to create a legal mandate requiring insurance companies to cover FPT for cancer patients.

So this is precisely what we did!…Read the rest of this article on the blog of the Alden March Bioethics Institute at Albany Medical Center.

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.

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!

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.

In June this past summer, the Oncofertility Consortium partnered up with the Cancer Legal Resource Center (CLRC) for a one-day conference event kicking off their 2011 Cancer Rights Conference series. It was a great success and provided many attendees with valuable information regarding cancer-related legal and financial issues. One attendee at the conference said: “This program was awesome. Everything presented was valuable information. As a cancer survivor it is comforting to know there is someone out there looking out for us. Thank you so much CLRC for all you do. You make a difference in our lives!”

On September 23rd, the 2nd CLRC Conference is being held in Washington DC and there is still time to sign up for this informative and FREE event. The conference 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.

It’s not uncommon for people to gift others with money on a birthday, or a graduation, at a wedding, etc.., but what about when people really need it? What about when people are in times of personal crisis?  Statistics show that 60% of all bankruptcies are a result of medical costs with most people unable to pay for emergency medical care even with the help of insurance. GiveForward, a fundraising website, was created to help individuals cope with a medical emergency with the financial and emotional support of family and friends.

GiveForward is a fundraising website which allows it’s users to create secure, fundraising webpages to raise money for emergency situations. The majority of fundraising pages are created to cover medical costs with 60% of beneficiaries fighting cancer. According to Ariana Vargas, Development Associate with GiveForward, the organization seeks to empower the friends and family of a loved one going through an illness to provide both emotional and financial support through a fundraising webpage. “It can be hard to know what to do or say when a loved one faces a medical emergency. GiveForward wants to help answer the question, ‘what can I do?’”

GiveForward provides support in addition to the fundraising tool available on the website to make the financial impact for the beneficiary more effective. Personal fundraising coaches are assigned to each individual in order to make the process as easy as possible considering all the stress the beneficiary is already under. Fundraising coaches help beneficiaries in a number of ways including, providing them with email templates to send out to family and friends when asking for donations as well as checking up with them throughout the process to give them tips and guidance for reaching their fundraising goals.

Several cancer patients have used GiveForward to raise money for fertility preservation procedures and Ariana is one of the members at GiveForward who helps them raise the funds they need in the short timeframe they have. She states that many cancer patients needing fertility preservation have discussed this with close family and friends so asking a family member to kick off the fundraiser with a substantial amount, really can set the tone for high donations. Like anything else though, “what you put into it is what you’ll get out of it,” so if you spend the time to personalize your fundraiser to those you are asking to contribute, you’re more likely to reach your goal.

This Sunday, August 7^th, you can find the GiveForward fundraising team at the Susan G. Komen Breast Cancer Walk finish line at Soldier Field in Chicago, IL. They’ll be wearing gray t-shirts with a pink elephant encouraging people to start talking about the elephant in the room and erase the stigma behind asking for help. For more information or to see examples of fundraisers, including those for fertility preservation procedures, please visit www.GiveForward.com.

In 1985, Maryland passed innovative legislation that required health insurance companies to cover the costs of fertility treatments. Since that time 15 U.S. states followed suit and now require insurance companies to cover the costs of egg retrieval, in vitro fertilization, and other infertility treatments for people who have trouble conceiving children. A new paper in the Journal of Law, Medicine, and Ethics by Oncofertility Consortium researchers discusses the barriers to expanding existing infertility mandates to include preventative fertility preservation for cancer patients.

The paper, “Insuring Against Infertility: Expanding State Infertility Mandates to Include Fertility Preservation Technology for Cancer Patients,” describes why cancer patients do not currently fall within the scope of existing mandates. These laws require that patients be diagnosed with infertility before receiving coverage. Authors Daniel Basco, Lisa Campo-Engelstein, and Sarah Rodriguez explain that while different legal and health organizations have their own definitions of infertility, most require that individuals engage in one year of unprotected intercourse without achieving a pregnancy. Since most cancer patients do not fall under that definition, state mandates do not cover fertility preservation.

Fertility preservation mandates may be necessary because patients interested in fertility preservation prior to beginning chemotherapy or radiation may not be able to afford the treatments. Since no health insurance company uniformly covers fertility preservation, cancer patients may need to appeal to their companies in the short time between diagnosis and treatment. Patients may not know how to navigate this complex process, especially while simultaneously dealing with a recent cancer diagnosis, and thus lose the ability to have biological children.

Basco, Campo-Engelstein, and Rodriguez also examine how current infertility mandates could be altered to incorporate the needs of young cancer patients who would like to preserve their fertility. Using the Massachusetts mandate as a model, they discuss the potential legislative routes to providing fertility preservation coverage to cancer patients. Cancer organizations may use these routes to advocate that health insurance companies cover fertility preservation at the state and federal level. In the meantime, patients should utilize their local medical advocates or the national FERTLINE’s patient navigators, who have had success increasing fertility preservation coverage for young cancer patients.

As discussed in our blog last month, a Cancer Support Community (CSC) survey found that almost half of women with breast cancer did not receive information about breast reconstruction when reviewing treatment options. The outcome of this survey is shocking, especially given that due to the Women’s Health and Cancer Rights Act (WHCRA) of 1998, insurance companies must cover the costs of breast reconstruction surgery if they cover the costs of mastectomy. While many patients are not clear on the specifics of what their health insurance covers, it seems odd that providers would not be familiar with WHCRA, as it is a federal act and therefore applies to all health insurance organizations—public and private—in all states. Additionally, WHCRA deals with common and well established procedures (mastectomy and breast reconstruction), is available for patients with the most well-known and publicized type of cancer (breast cancer), and received significant media coverage during its passage.

Determining why providers are not discussing breast reconstruction with their patients is an important next step to ensuring that these conversations happen. If lack of knowledge is the main reason for the dearth of conversations, then perhaps the CSC, or some other organization, can create a new resource to inform providers. This provider resource could serve as a parallel of and/or work in conjunction with the CSC’s new national program, “Frankly Speaking about Cancer: Spotlight on Breast Reconstruction,” which offers comprehensive information about breast reconstruction as a way to empower patients.

Some providers may know about WHCRA but generally not mention breast reconstruction to their patients because they do not see it as part of their role (e.g. they are oncologists, not plastic surgeons; they are nurses, not physicians). These providers could benefit from the Oncofertility Consortium model of bringing together experts from a variety of disciplines in order to ensure patients receive the best and most complete cancer care.