Friday, February 27, 2009

Will Cancer be Cured in Our Lifetime?

President Obama made a commitment in his first address to Congress this week to seek a cure for cancer in our lifetime. Watch the video. Do you think it will happen?

Thursday, February 26, 2009

Research Update - New England Journal of Medicine Recognizes Importance of Cancer and Fertility

An article written by the Oncofertility Consortium's leader, Dr. Teresa Woodruff, was published today in the New England Journal of Medicine about cancer and fertility. The review paper describes current and emerging options for fertility preservation for cancer patients. This is another great validation of Fertile Hope's mission and fantastic way to continue to raise awareness in the medical community. Check it out...

p.s. Know of any other recent articles on cancer and fertility? Let us know.

Cancer Makes Primetime - Will Fertility Come Up?

Everyone used to tell me that I should try out for Donald Trump's show, The Apprentice. I always laughed, but was secretly flattered. It would have been an unbelievable way to raise awareness about Fertile Hope, but I was always too shy to try out. This Sunday, The Celebrity Apprentice will premiere on NBC and includes two testicular cancer survivors, Scott Hamilton and Tom Green - both of whom, I believe, banked their sperm prior to treatment. I always love it when cancer makes primetime and hope that fertility comes up, especially with Scott who is now a dad. Will you watch?

Wednesday, February 25, 2009

Looking for the Perfect Baby Gift?

We’ve got it! Serena and Lily - the makers of the most luxurious nursery bedding - donated gorgeous stroller blankets to Fertile Hope for our Baby Blanket Program. Donate a minimum of $50 and we’ll send a blanket to you – or anyone you know with a new baby on the way, adoption in the works, toddler running around or grandparents awaiting a visit of their grandchildren. This is such a great way to buy what you need and support us at the same time. Supplies are limited and the blankets are too beautiful to stick around for long – act fast!

p.s. They are available in Harper (pink), Jordan (green) and William (blue).

Tuesday, February 24, 2009

Educate Me: Complementary and Alternative Medicine for Cancer-Related Infertility

Last week I was inundated with emails about complementary and alternative medicine (CAM). Requests for referrals. Questions about its viability to help with cancer, infertility and other medical conditions. Inquiries about my personal experiences and beliefs. The volume of requests in one week sent me down memory lane to a time when I was obsessed with CAM. This was, of course, when I was in the midst of my cancer crisis. I tried it all. I have my own miracle stories as well as spooky experiences. There are things I’ve incorporated into my daily life and others I’ll never do again. From my perspective, CAM doesn’t seem to be as popular in the fertility world as it is in the cancer world, but the area is growing. Where the two overlap – in our world of cancer and fertility – there seem to be a lot of unanswered questions. For example, you are born with all of the eggs you will ever have and once they are destroyed there is nothing anyone can do to bring them back. Is there a role for CAM here? Please educate me. Can CAM help cancer survivors preserve their fertility? Can it help with pregnancy after cancer? Patients, survivors and I want to know more…

Monday, February 23, 2009

What Does the Economic Stimulus Plan Mean for Cancer and Fertility?

As a liberal democrat married to a conservative republican, I am hearing a lot of great debates about the merits (and pitfalls) of President Obama's stimulus plan, the American Recovery and Reinvestment Act of 2009. After reading the Act’s Press Summary (and the LiveStrong Blog), I thought the following might be of interest to you:
  • $10 billion to the National Institutes of Health (NIH) for biomedical research in areas such as cancer and stem cells (including at least $1.2 billion for cancer research).
  • $1 billion to the Centers for Disease Control and Prevention (CDC) for prevention and wellness programs including cancer screening and education programs and, maybe, infertility (if we can get it recognized by the CDC as a disease!).
  • 65% federal subsidy for COBRA health insurance premiums for up to nine months for workers who lose their jobs from September 1, 2008 through December 31, 2009.
  • $19 billion for a national health information technology system to support electronic medical records in hopes of lowering medical costs and improving quality of care (which would also greatly help with improved informed consent around cancer-related infertility).

I would love to know more. Anyone have any additional knowledge, insight or opinions as to how this will affect the cancer and/or fertility communities?

Are You a "Young Invincible?"

Uninsured Young Adults, Do-It-Yourself Healh Care, published last week in the New York Times, is causing quite a stir in the young adult cancer community. Does the article describe you?

Friday, February 20, 2009

Zagat Expands to Doctor Reviews: Love It or Hate It?

Zagat and Wellpoint are joining forces to provide doctor reviews and ratings by patients. What do you think? Would you rate your doctor? Would you use a rating?

Thursday, February 19, 2009

What Is In It For Me?

Ages ago I took a fundraising class and was told that the #1 message in any proposal we submit needs to be what is in it for the funder. What recognition and benefits do they get in return for their money? For a few years there seemed to be a backlash against this - mostly around the notion that pharma was influencing educational content and programs through grants. This fall we ran a test, accidentally.

Fertile Hope sent out a request to corporate donors asking them to support us just because – just because we are a great organization, we spend your donations wisely, the long-term benefit of your support will benefit your business, we’ve proven time and again that we are effectively meeting people’s needs and growing the market, etc, etc, etc. The return rate was dismal. Coincidentally, two months later, we sent out a request to the same companies asking them to support us in a way that also promotes them. The return rate was phenomenal - companies were literally fighting for limited placements and begging to be included! Lesson learned.

Now the key is to continue to come up with creative ways to meet the cancer community’s needs in ways that also have big benefits for our funders. Any ideas?

Wednesday, February 18, 2009

Tired of Pink? Help Us Figure Out How to Bring Infertility Out of the Closet...

Years ago no one talked about breast cancer publicly. It was whispered about in the aisles of the grocery stores, kept behind closed doors, and dealt with in secret and isolation. Now, it is on billboards in Times Square! This is exactly what needs to happen with infertility. We are still in the whisper phase and need to figure out how to get to Times Square.

Today, I was in a great meeting brainstorming with a diverse group of leaders from the reproductive community. The meat of our conversation was how to change this – specifically, how the entire reproductive community can work together to increase awareness and improve access.

I truly believe that we can achieve more together than we can alone, which is why meetings like this get me very fired up. The key is to make sure that the conversation doesn’t stop with the meeting. So, while we all digest all of the ideas discussed and before we move forward with any new programs, I want to solicit your advice. How do you want to see us remove the infertility stigma and increase access to treatments?

Tuesday, February 17, 2009

My Ovaries Are D-E-A-D, Dead...

I love my job, but like everyone I have good days and bad days. There are definitely times, especially in this economy, when I question why I do what I do. Almost immediately after my mind heads down this path, something reminds me why I should stay the course. Last week, while on vacation and daydreaming about giving it all up and moving to the mountains to ski forever, I received the following email from a survivor who Fertile Hope approved for financial assistance for egg freezing through our Sharing Hope program:

“Just found out... My ovaries are d-e-a-d, dead. Thanks to you, I have those seven frozen eggs, hope, and no regrets.”

Needless to say, Fertile Hope’s work is important and I am here to stay. Check out more inspirational stories or share yours. We all need to stay inspired, right?!

Friday, February 13, 2009

Fertile Hope on Facebook – Waste of Time or Important Communication Vehicle?

Fertile Hope is now on Facebook and trying to ramp up our membership base and maximize our presence. As our team spends valuable time trying to make this happen, I can’t help but wonder: is this a waste of time or an important communication vehicle? If the later, what strategies do you recommend we employ to make sure we get the biggest bang for our buck? Can you recommend examples of companies (non-profit or for-profit) that do it well? While we sort it all out, please “join” our cause on Facebook.

Thursday, February 12, 2009

How Have the Costs of Cancer Impacted You?

The American Cancer Society and the Kaiser Family Foundation released a report titled “Spending to Survive” illustrating the financial burdens faced by cancer patients, who often face enormous medical costs even when they have health insurance. People often ask me why the financial eligibility criteria for our Sharing Hope financial assistance program are so high ($75-100,000 for women and $50-75,000 for men) and this is exactly why. Everyone knows that the cost of cancer is high, if you don’t have insurance. But few people know that even with insurance, people are spending so much. These costs coupled with cost of sperm banking ($1,500), egg and embryo freezing ($15,000), surrogacy ($100,000) or adoption ($25,000) can make parenthood after cancer unattainable. How have you been impacted by these costs?

Wednesday, February 11, 2009

The Octuplets Story Continues – Does the “Baby Business” Need to be Regulated?

There is a lot to talk about when it comes to the story of the octuplets, but what strikes me as the most concerning is the regulation question. Should reproductive clinics – and their patients – be regulated on matters like how many embryos should be transferred into a woman’s uterus? And, if so, who should be the regulator? The media keeps looking to the government, which is one avenue – one that I am guessing is not favored by the reproductive clinics. Another method of regulation is insurance companies. When something is covered by insurance there are rules around what they will and will not cover. Generally speaking, insurance companies don’t pay for experimental procedures; treatments outside the scope of the industry’s standard of care (e.g. which would help enforce ASRM’s guidelines); etc. This leaves me wondering: can we seize this opportunity and kill two birds with one stone? Improved regulation and increased access…

Tuesday, February 10, 2009

Nauseous from Chemo or Pregnancy? ShopNBC Wednesday for Relief!

Chemo was rough, but like most grim things in life the memory of it faded with time. That is, until I was pregnant with Paisley and morning sickness became a daily reminder. Fortunately, by the time I was pregnant with Walker, I didn’t have to experience this constant chemo reminder – a fantastic new product had been launched, Psi Bands. What, you ask, are Psi Bands? Here is an excerpt from their website:

“Psi Bands (pronounced "Sigh Bands") are acupressure wrist bands for the relief of nausea due to morning sickness (pregnancy), motion sickness/ travel, chemotherapy, and anesthesia. Unlike any product on the market, Psi Bands are: Drug-free, Adjustable, Comfortable, Fashionable, Waterproof, Reusable, and Affordable. FDA-cleared Psi Bands are a stylish alternative for those who suffer from nausea."

Fertile Hope received samples in advance of an introductory call we were scheduled to have with the founders, so we happened to have a few sets laying around the office one morning when I was green. I tried them on and, voila, they worked like magic! I was in love – and so is the media. They’ve been featured in FitPregnancy, SELF, O, The Oprah Magazine and more! Even better, $1/band from the sale of the Cherry Blossom band is donated to Fertile Hope. Watch ShopNBC tomorrow, Wednesday, February 11, at 2 AM, 7 AM, or 4 PM (CST) for a great deal – or buy them anytime at drugstore.com.

Ever tried them? Tell us what you think…

Monday, February 9, 2009

Research Update - Pregnancy Has No Effect on Breast Cancer Survival

The largest single-institution study to look at pregnant breast cancer patients published a study today in Cancer (online). Researchers from MD Anderson Cancer Center reported that young women who develop breast cancer during their pregnancy, or who are diagnosed within one year of their pregnancy, have no difference in rates of local recurrence, distant metastases and overall survival compared to other young women with the disease. However, pregnancy contributed to a delay in breast cancer diagnosis, evaluation, and treatment, so it is reccomended that primary care and fertility doctors should be aggressive in the workup of breast symptoms in the pregnant population to expedite diagnosis and allow multidisciplinary treatment. The researchers estimate that approximately 10% of breast cancer patients under the age of 40 develop the disease during pregnancy. Here is a link to the abstract.

Breast cancer patients and survivors (and the healthcare professionals who treat you), please tell us what you think...

This is Why I Wanted to Survive!

First smiles. First steps. First words. First day on skis! These are the moments when my heart swells, my eyes well up with tears, time freezes and I think: this is why I wanted to survive! There are a million reasons to fight cancer. For me, motherhood was at the top of the list. What fuels your fight?

Research Update - Great News for Endometrial Cancer Patients

A study just published in the Journal of Clinical Oncology concluded that fertility-sparing surgeries that leave the ovaries intact are safe for premenopausal women with early-stage endometrial cancer. Here is a link to the abstract.

What does this mean for you or your patients? Any success stories to share?

Friday, February 6, 2009

Using Your Frozen Eggs? Be a Part of HOPE!

Cancer patients helped spark and propel the egg-freezing craze in the United States. And, now, for those of you who are ready to go back and use your frozen eggs to try to get pregnant, there is a clinical trial for you to participate in – the HOPE Registry run by EMD Serono. The registry will collect data to help answer questions like:
  1. How many eggs do I need to freeze to have a baby?
  2. Which egg freezing technique should I use – slow freezing or fast freezing (vitrification)?
  3. Will my baby be healthy?

The trial is only as good as the number of people who participate – the more the better. Participating is a cinch. You don’t have to do anything. Your reproductive doctor just signs you up and then anonymously shares your data with the trial. So, if you or anyone you know is using their frozen eggs, ask your fertility doctor to sign you up. What do you think – would you participate?

Research Update - New Study Says Fertility Drugs Not Linked to Ovarian Cancer

One of the largest studies to look at whether fertility drugs increase the risk of ovarian cancer found “no convincing association" as published in the British Medical Journal on Thursday. Here is a link to the abstract.

Do you worry about a risk of cancer from fertility drugs?

Thursday, February 5, 2009

Can You Let Go of Balance and Still Have It All?

Up late working again after an early morning in the gym, long day in the office, double dinner-bath-story-bed-time with the kids, laundry, packing and a just-barely-squeezed-in-but-lovely dinner with my husband, I am reminded of the conversation that set me free. One rough day, after finishing up a great meeting with a big sponsor only to discover my sweater was covered with yogurt from that one last extra hug good-bye from the kids, I needed a pep talk.

I called my hero to ask her – how do you do it? My hero happens to be the woman who saved my life (twice!), Dr. Nancy Snyderman, and as if that’s not enough to make a superhero, she always seemed to have it all – and it all under control. I wanted - no needed - her secret!

I told her that I was struggling to balance work, motherhood, friendship, romance, travel, and everything else on my to-do list. I fought so hard for this life, but now I am struggling to keep up with it. Her secret shocked me. “Forget balance!” she said. If balance is the goal you will constantly fail. Give it up. You can't be great at everything everyday. But, she said, you can have it all!

Do you agree? What’s more important to you - balance or having it all? Do you feel like you have either?

Wednesday, February 4, 2009

Take Our Poll - Should Nonprofit Organizations Sell Ad Space on their Websites?

Until recently, my answer to this question was a firm no. The Fertile Hope team knew not to broach the subject with me. I wouldn’t budge. Until last week, when we opened intake for our annual Cancer & Fertility Referral Guide and, gasp, we are selling online ads.

What changed? A lot. My job is to do what is best for our users. Patients and survivors keep telling us that they want more information, more customization, more, more, more. They want it easier, faster and all for free. We used to be able to meet these needs through big corporate grants, but the landscape of fundraising is changing and those grants are not as easy to come by. So, we had to get creative. Can we tie meeting a patient need with a diversified, sustainable revenue stream?

We checked out the market to see how others do it. What is WebMD’s revenue model? Ad sales. BabyCenter? Ad sales. What do you think? Take our poll. Does this take away from the credibility of the information we provide? Would you rather have no ads and no information or ads and the information and tools you need? Would you rather pay for the information yourself? While we wait to hear the verdict – please buy your ads!

Tuesday, February 3, 2009

Cancer, You Said I’d Never Bear Children. My Daughter Says You’re Wrong.


When I started Fertile Hope no one – I mean no one – talked about cancer and fertility. When I would tell people what I did for a living, they would look at me funny and ask: what does cancer have to do with fertility? So, you can imagine my surprise when I opened up New York Times Magazine recently and saw an ad by Memorial Sloan-Kettering Cancer Center that said: “Cancer, You said I’d never bear children. My daughter says you’re wrong.” Yes, a full page ad in a mainstream magazine about cancer and fertility!

I used to meet with the leaders of large cancer centers around the country and hear the same thing, time and time again - patients don’t think fertility is important; more complete informed consent isn't necessary (e.g., it was ok to sterilize patients without their full knowledge!), etc. Really they were saying that it shouldn’t be discussed with everyone (as shown in studies, this generally meant poor patients, gay patients or very sick patients).

Now, a few short years later, these subjective judgments are being challenged - one of the biggest cancer centers in the world is promoting improved cancer-related fertility care as the reason to get treated there. Wow! We’ve come a long way. . .

p.s. The woman featured in the ad is a cervical cancer survivor who underwent a fertility-sparing surgery at MSKCC. We salute Fertile Hope’s Medical Advisory Board member, Dr. Yukio Sonoda, who worked along with Dr. Nadeem Abu-Rustum to help bring this procedure to the US from France and make it available to MSKCC patients.

Monday, February 2, 2009

How Can You Prove You Had Cancer?

Did you see Erin Zammett Ruddy’s article in Glamour about the woman (pictured) who faked cancer?! Supposedly, it is happening more and more. These fakers are trying to access some of the perks of being in the "cancer club" like free retreats, scholarships and financial assistance. Fertile Hope is looking to expand its portfolio of financial assistance programs and keeps running into this question – how does someone prove they had cancer? We can verify income with the IRS, citizenship with a Social Security number, and age with a Driver’s License, but cancer is hard to prove. Are you listening LAF? Like AARP, I want a LIVESTRONG card with benefits! Any other ideas?