Alice Cristi - Fertile Action, 2.4MB

Helping Those Touched By Cancer Become Parents
www.fertileaction.org
My Story
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Alice Crisci, DX Breast Cancer, 31-years-old
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Devastated to learn I had any risk to
becoming infertile from chemotherapy
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Froze 14 embryos with donor sperm and 11
eggs (slow freeze method)
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Didn’t qualify for the only financial aid
program available at the time
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Forced to put $20,000 fertility preservation
on my AMEX and cashed out my retirement
plans to pay for other cancer expenses also
not covered by insurance
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Married 34-year-old friend never informed
of fertility risks when she was diagnosed
A Cancer Charity for Fertile Men and Women
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A Project of Community Partners
Market Need
• Over 40,000 women diagnosed with cancer in
the US before they are 40
• Fewer than 50% of oncologists discuss
fertility risk with their patients
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Most young adult cancer patients do not
have $12,000 - $20,000 cash or an AMEX
to cover fertility preservation
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Very few insurance companies cover fertility
preservation
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Most fertility preservation options are
considered experimental
• Few educational resources available for
cancer and fertility
A Cancer Charity for Fertile Men and Women
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A Project of Community Partners
Mission and Vision
Education
Patient Navigation
Financial Aid
Advocacy
A Cancer Charity for Fertile Men and Women
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A Project of Community Partners
Education - Website
A Cancer Charity for Fertile Men and Women
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A Project of Community Partners
Education – Oncology
A Cancer Charity for Fertile Men and Women
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A Project of Community Partners
Education – Outreach Tour
Creating a Family After Cancer: 12 US Cities
A Cancer Charity for Fertile Men and Women
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A Project of Community Partners
Education –
Fertile Edge Magazine
A Cancer Charity for Fertile Men and Women
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A Project of Community Partners
Patient Navigation
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Peer-to-Peer support
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Explaining family planning
options to newly diagnosed
cancer patients
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Presenting choices for fertility
preservation
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Negotiating reduced fees on
behalf of the patient
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Following up on blood work
results and explaining numbers
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Consulting on sperm, egg and
embryo donation, IVF,
surrogacy, natural conception
and adoption
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Providing understanding,
empathy and hope
A Cancer Charity for Fertile Men and Women
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A Project of Community Partners
Case Study: Stefanie
• Married 33-year-old with no children
• Diagnosed with stage 1 uterine cancer
• Denied other financial aid support
• Contacted her desired fertility clinic and asked for pro bono case to
be donated. They already donate about $500,000 in services to
cancer patients per year.
• Contacted a specialty pharmacy who helped secure all her meds
from donations
• Stefanie and her husband wrote:
“You have given us hope in such a desperate
time of despair. Thank you more than we can
ever express.”
A Cancer Charity for Fertile Men and Women
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A Project of Community Partners
Financial Aid –
Community Effort
Donated Fertility
Clinic Fees
Egg Donor,
Surrogacy and
Adoption Grants
Donated
Medications
Our Goal:
Provide
affordable
family planning
services
Donated Donor
Sperm and LongTerm Storage
Fees
Until regulation forces insurance companies to cover fertility preservation for cancer patients, we
believe the fertility community has a social responsibility to ban together and support these women
A Cancer Charity for Fertile Men and Women
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A Project of Community Partners
Financial Aid
• Donated IVF services
• Donated medications
• Reduced long-term storage fees
• Reduced sperm vial fees
• Reduced egg donor fees
• Reduced surrogacy fees
• Egg donor grant program
• IVF grant program
• Women diagnosed with cancer
• Women diagnosed with the BRCA
gene
• Couples struggling to get
pregnant post cancer treatment
• Average Savings Per Patient:
$10,000 or 85%-100%
• 7 States with Pro Bono Egg
Freezing
We do not discriminate based on past financials, type of
cancer or age. We help everyone in any way we can.
A Cancer Charity for Fertile Men and Women
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A Project of Community Partners
Case Study - Matt
• Matt – DX with a rare pediatric cancer that only a handful of other
people have been diagnosed with in their twenties
• He banked healthy sperm, but he and his wife experienced two
failed embryo transfers
• He and his wife depleted their savings on the two IVF cycles
• They’ve been trying unsuccessfully to get pregnant naturally for a
year and are desperate to have a family
• We found a private benefactor who is donating IUI’s and an IVF
cycle to them
• Matt’s response:
“Oh my god. I am in shock right now. We thought all
hope was lost. This is amazing!”
A Cancer Charity for Fertile Men and Women
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A Project of Community Partners
Patient Advocacy
• We ask oncologists to ask one critical question of their patients:
“Have you considered your fertility preservation options?”
• We advocate for reduced fertility preservation fees for the patient
• We advocate for changes in legislation
– AB 428 California
A Cancer Charity for Fertile Men and Women
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A Project of Community Partners
Patient Advocacy: Ethics
• Ethics and Fertility Preservation
– It’s the patient’s choice what kind of fertility preservation to pursue
– Egg freezing vs Embryo freezing – at what age is embryo freezing always
a better option?
– Do a baseline AMH on every oncofertility patient
– Does the patient have time for more than one round of fertility
preservation?
– Are you offering a stimulation with Tamoxifen or Letrozol to estrogen
sensitive breast cancer patients?
– Economics of Fertility Preservation
– Forced delayed child-bearing is a fertility risk like with thyroid cancer
– Consider Fertility Preservation Preventative Medicine
– Advocate elective egg freezing for those younger than age 35
– Be straight – no false hope, just hope.
A Cancer Charity for Fertile Men and Women
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A Project of Community Partners
Patient Advocacy:
How You Can Help
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Donate to the patient – write it off on your taxes
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Offer One Pro Bono Egg Freezing Case/Month
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Connect me to Your Pharma Reps – Don’t give FREE meds to infertility patients who
have insurance!! Save them for those whose insurance doesn’t cover them!
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Offer specialty pricing for patients post cancer treatment
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Become a FAN member or Buy an Advertorial in the Magazine
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Participate in our educational programs
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Get a baseline AMH on the patient before they start treatment even if they don’t
choose fertility preservation
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Send your patients to us for free peer-to-peer support
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Collaborate with us on everything from writing articles on the blog to events!
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Use the V-codes:
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Fertility Preservation Counseling V-26.42
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Fertility Preservation Procedure V-26.62
Establish a Reproductive Tourism package with us to circumvent barriers in other
countries preventing survivors from becoming parents
A Cancer Charity for Fertile Men and Women
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A Project of Community Partners
Can’t Donate IVF?
Join Our FAN Club
Become a Part of The Solution
Member Benefits:
 Search engine optimization = more
referrals to you and improved brand
recognition of your fertility clinic
 Inclusion on our website
 Referrals to patients
 Inclusion in print materials distributed
to oncology centers and cancer doctors
 Attractive office signage
 Periodic press releases
 Social media mentions
 Inclusion in all print media
 Subscription to Fertile Edge Magazine
 Professional prestige
$750 / Physician
 Feeling of goodwill
A Cancer Charity for Fertile Men and Women
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A Project of Community Partners
What Makes Us Different?
A Cancer Charity for Fertile Men and Women
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A Project of Community Partners
Advisory Board
• Mindy Berkson
• Brian Acacio, MD
• Tracy Beyer
• Lisa Cassileth, MD
• Aurora Brown
• Wendy Chang, MD
• Alice Crisci
• Catherine Dang, MD
• Annamarie Currie
• David Diaz, MD
• Alexa Fischer
• Steve Frankel, MD
• Linda Menzel
• Roger Good
• Haley Eckhart
• Bradford Kolb, MD
• Andrea Stratton
• Philomena McAndrew, MD
• Jonathan Strietzel
• Cappy Rothman, MD
• Michelle Whitlock
A Cancer Charity for Fertile Men and Women
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A Project of Community Partners
Special Thanks
• Acacio Fertility
• New York Fertility Services
• Abington Reproductive Medicine
• Oncofertility Consortium
• Fertile-Future California Cyrobank
• RMA New Jersey
• Dr. Aimee Eyvazzadeh
• Sher Fertility Institute
• Ferring Pharmaceuticals
• CU Denver – Dr. Laxmi
Kondapalli
• Fertile Future – Canada
• UCLA Healthy Lives After
Cancer
• HRC Fertility
• Mandell’s Pharmacy
• USC Fertility
• MDR Pharmacy
A Cancer Charity for Fertile Men and Women
• West Coast Fertility Centers
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A Project of Community Partners
Questions?
A Cancer Charity for Fertile Men and Women
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A Project of Community Partners