Insurance coverage challenges cancer patients' hope for children
SEATTLE -- One month ago, Amanda Loring, a successful 32-year-old real estate agent, was busy planning her dream wedding in Mexico. Today, she is dealing with colon cancer and fighting to save her dream of having a child with her husband.
Loring had no family history of cancer and no genetic predisposition to the disease. But after months of abdominal pain, she urged doctors to perform a colonoscopy - even though would have to pay for the procedure out of pocket. Loring never expected doctors would find colon cancer. The young bride-to-be had part of her colon removed early in March and will have to start chemotherapy immediately after her May 1 wedding.
As she grappled with the cancer diagnosis, Loring also discovered she could become infertile from chemotherapy. She was shocked to learn her insurance provider wouldn't pay for the nearly $15,000 procedure to freeze embryos that could later be implanted in her uterus through in vitro fertilisation.
"I was really frustrated because it seemed like such a necessary thing," Loring said. "It's unfortunate that insurance companies won't look at it as a cost of treatment."
Various cancer treatments can threaten a patient's ability to have a biological child later in life. Chemotherapy can accelerate a woman's biological clock, pushing her into early menopause or damaging the quality of her eggs. Radiation to a woman's pelvis can also damage the uterus and ovaries.
For men, radiation to this area can reduce or completely destroy sperm production.
The risks to fertility vary depending on the patient's age, health and the type of cancer treatment they receive. But even with lower-risk treatments, patients are still facing a 20-percent chance they will become infertile, according to Dr. Margarett Shnorhavorian, a urologist at Seattle Children's Hospital.
Today, the science of preserving fertility in cancer patients is better than ever before. But some patients still cannot take advantage of the technology available because their insurance does not cover fertility preservation.
Across the country, only 15 states currently require a mandate to cover or offer coverage for infertility treatment. Washington is not one of them. Certain private plans may offer coverage for infertility treatments, but even those insurance companies can deny coverage for fertility preservation if the patient about to begin cancer treatment is not infertile yet.
"In Washington, it's a dog fight," said Dr. Kat Lin with the University of Washington's Division of Reproductive Endocrinology & Infertility.
"I write letters all the time with guidelines from the American Cancer Society and American Society for Reproductive Medicine supporting that these procedures should be offered to all cancer patients in hopes of having fertility preservation procedures covered."
In addition, there is very little financial assistance available to women who cannot afford to pay for the $10,000 to $15,000 cost of egg harvesting up front.
The LIVESTRONG foundation's Fertile Hope program is one of the only options for patients. Simply by submitting their tax information to prove income, patients can qualify for $5,000 in fertility medications overnight.
Doctors can also arrange discounts for the patient's yearly egg/embryo storage fee, but that still leaves patients responsible to pay $7,000 to $10,000 up front, all while facing medical bills for the actual cancer treatment.
"There's no organized funding and there's an absolute need for it," Lin said. "A few thousand dollars offers the chance of building a family for young cancer patients."
While Loring and her fiancé both have well-paying jobs, the couple used much of their savings to pay for their upcoming wedding and significant medical bills related to her surgery. With just a couple weeks to come up with thousands of dollars, Loring turned to friends and family to help pay for her embryo freezing, even creating an online fundraiser.
"I feel bad for women that don't have family or friends to help them," Loring said. "It's a horrible thing to have to decide when you're already trying to save your own life."
Kristin Zippro, a 32-year-old mother who was diagnosed with breast cancer in January, is struggling to pay for her embryo freezing.
"My insurance is willing to pay for breast reconstruction but not willing to pay for this," Zippro said. "It doesn't make sense to me."
At one point, Zippro decided that her family wouldn't be able to afford the procedure, but when her chemotherapy was delayed, Dr. Lin encouraged her to look at other options, including having her eggs harvested in at a clinic in Oregon, where under a special program the procedure costs $3,000 instead of $7,000.
"She saw that we desperately wanted to expand our family and hung onto that," Zippro said. "We desperately want a sibling for our son. To have another child, even just one more, would make our family complete."
For some, the financial challenges of fertility preservation pale in comparison to the emotional burden of the process while dealing with a cancer diagnosis.
"Your mind isn't ready to make all these huge decisions really quickly," Zippro said. "I feel like my head is going to spin off my body."
Jean Thompson was 38 years old and also engaged when she learned she had breast cancer. In a matter of weeks she had a double mastectomy, underwent fertility treatments to have her eggs harvested and started chemotherapy soon after. The process left her "mentally and emotionally exhausted" as she injected herself three times a day with fertility medications, visited the doctor every other day for ultrasounds and even drove out to a UPS facility to try to retrieve a package of lost medications one night.
"It makes you wonder how much more you can take at certain times," Thompson said.
Now 40 years old and cancer free, Thompson's cousin is preparing to be a surrogate for the embryos she and her husband had frozen.
"People do this for hope," said, Julie Lamb, Thompson's doctor at Pacific Northwest Fertilty.
Informing cancer patients of the risks to their fertility has not always been standard protocol, so some patients simply haven't been told that their cancer treatment could keep them from having a biological child later in life, Lin says.
Lamb has met patients who are having trouble getting pregnant but never knew their past cancer treatment could cause infertility.
"It's awful," Lamb says. "I have to say 'I'm sorry I'm the first to tell you this.'"
The UW's Lin says learning about infertility is worse for survivors than the initial cancer diagnosis.
"There's something about infertility that is significantly difficult for people to deal with," Lin said. "Because there's a monthly reminder that you're not pregnant for the rest of your life." Dr. Shnorhavorian says that while adolescents may not think much about having children, it will be important to them in the future.
"It's been recorded in multiple studies, survivors report one of the most important things in their quality of life is parenthood," she said.
While it can be an uncomfortable conversation to have with boys and girls, Shnorhavorian said talking about fertility preservation can be "life affirming" for patients.
"Having that conversation and giving them that choice, they can feel good about that later," Shnorhavorian said. "There's a light at the end of the tunnel. We're thinking about your future. Survivorship starts now."
Despite the challenges, Doctors Lin, Lamb and Shnorhavorian each urge patients facing a cancer diagnosis to see a fertility specialist to learn about their options before they make any decisions.
"We don't see it as a failure if they elect not to do it," said Leah Kroon, a clinical nurse specialist at Children's Hospital. "In my mind, it's a failure if we don't educate them on the options."
Loring had no family history of cancer and no genetic predisposition to the disease. But after months of abdominal pain, she urged doctors to perform a colonoscopy - even though would have to pay for the procedure out of pocket. Loring never expected doctors would find colon cancer. The young bride-to-be had part of her colon removed early in March and will have to start chemotherapy immediately after her May 1 wedding.
As she grappled with the cancer diagnosis, Loring also discovered she could become infertile from chemotherapy. She was shocked to learn her insurance provider wouldn't pay for the nearly $15,000 procedure to freeze embryos that could later be implanted in her uterus through in vitro fertilisation.
"I was really frustrated because it seemed like such a necessary thing," Loring said. "It's unfortunate that insurance companies won't look at it as a cost of treatment."
Various cancer treatments can threaten a patient's ability to have a biological child later in life. Chemotherapy can accelerate a woman's biological clock, pushing her into early menopause or damaging the quality of her eggs. Radiation to a woman's pelvis can also damage the uterus and ovaries.
For men, radiation to this area can reduce or completely destroy sperm production.
The risks to fertility vary depending on the patient's age, health and the type of cancer treatment they receive. But even with lower-risk treatments, patients are still facing a 20-percent chance they will become infertile, according to Dr. Margarett Shnorhavorian, a urologist at Seattle Children's Hospital.
Today, the science of preserving fertility in cancer patients is better than ever before. But some patients still cannot take advantage of the technology available because their insurance does not cover fertility preservation.
Across the country, only 15 states currently require a mandate to cover or offer coverage for infertility treatment. Washington is not one of them. Certain private plans may offer coverage for infertility treatments, but even those insurance companies can deny coverage for fertility preservation if the patient about to begin cancer treatment is not infertile yet.
"In Washington, it's a dog fight," said Dr. Kat Lin with the University of Washington's Division of Reproductive Endocrinology & Infertility.
"I write letters all the time with guidelines from the American Cancer Society and American Society for Reproductive Medicine supporting that these procedures should be offered to all cancer patients in hopes of having fertility preservation procedures covered."
In addition, there is very little financial assistance available to women who cannot afford to pay for the $10,000 to $15,000 cost of egg harvesting up front.
The LIVESTRONG foundation's Fertile Hope program is one of the only options for patients. Simply by submitting their tax information to prove income, patients can qualify for $5,000 in fertility medications overnight.
Doctors can also arrange discounts for the patient's yearly egg/embryo storage fee, but that still leaves patients responsible to pay $7,000 to $10,000 up front, all while facing medical bills for the actual cancer treatment.
"There's no organized funding and there's an absolute need for it," Lin said. "A few thousand dollars offers the chance of building a family for young cancer patients."
While Loring and her fiancé both have well-paying jobs, the couple used much of their savings to pay for their upcoming wedding and significant medical bills related to her surgery. With just a couple weeks to come up with thousands of dollars, Loring turned to friends and family to help pay for her embryo freezing, even creating an online fundraiser.
"I feel bad for women that don't have family or friends to help them," Loring said. "It's a horrible thing to have to decide when you're already trying to save your own life."
Kristin Zippro, a 32-year-old mother who was diagnosed with breast cancer in January, is struggling to pay for her embryo freezing.
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"My insurance is willing to pay for breast reconstruction but not willing to pay for this," Zippro said. "It doesn't make sense to me."
At one point, Zippro decided that her family wouldn't be able to afford the procedure, but when her chemotherapy was delayed, Dr. Lin encouraged her to look at other options, including having her eggs harvested in at a clinic in Oregon, where under a special program the procedure costs $3,000 instead of $7,000.
"She saw that we desperately wanted to expand our family and hung onto that," Zippro said. "We desperately want a sibling for our son. To have another child, even just one more, would make our family complete."
For some, the financial challenges of fertility preservation pale in comparison to the emotional burden of the process while dealing with a cancer diagnosis.
"Your mind isn't ready to make all these huge decisions really quickly," Zippro said. "I feel like my head is going to spin off my body."
Jean Thompson was 38 years old and also engaged when she learned she had breast cancer. In a matter of weeks she had a double mastectomy, underwent fertility treatments to have her eggs harvested and started chemotherapy soon after. The process left her "mentally and emotionally exhausted" as she injected herself three times a day with fertility medications, visited the doctor every other day for ultrasounds and even drove out to a UPS facility to try to retrieve a package of lost medications one night.
"It makes you wonder how much more you can take at certain times," Thompson said.
Now 40 years old and cancer free, Thompson's cousin is preparing to be a surrogate for the embryos she and her husband had frozen.
"People do this for hope," said, Julie Lamb, Thompson's doctor at Pacific Northwest Fertilty.
Informing cancer patients of the risks to their fertility has not always been standard protocol, so some patients simply haven't been told that their cancer treatment could keep them from having a biological child later in life, Lin says.
Lamb has met patients who are having trouble getting pregnant but never knew their past cancer treatment could cause infertility.
"It's awful," Lamb says. "I have to say 'I'm sorry I'm the first to tell you this.'"
The UW's Lin says learning about infertility is worse for survivors than the initial cancer diagnosis.
"There's something about infertility that is significantly difficult for people to deal with," Lin said. "Because there's a monthly reminder that you're not pregnant for the rest of your life." Dr. Shnorhavorian says that while adolescents may not think much about having children, it will be important to them in the future.
"It's been recorded in multiple studies, survivors report one of the most important things in their quality of life is parenthood," she said.
While it can be an uncomfortable conversation to have with boys and girls, Shnorhavorian said talking about fertility preservation can be "life affirming" for patients.
"Having that conversation and giving them that choice, they can feel good about that later," Shnorhavorian said. "There's a light at the end of the tunnel. We're thinking about your future. Survivorship starts now."
Despite the challenges, Doctors Lin, Lamb and Shnorhavorian each urge patients facing a cancer diagnosis to see a fertility specialist to learn about their options before they make any decisions.
"We don't see it as a failure if they elect not to do it," said Leah Kroon, a clinical nurse specialist at Children's Hospital. "In my mind, it's a failure if we don't educate them on the options."
