Delaware Strives to Be First in Fertility Care
Recent legal and organizational efforts have propelled the state forward in family planning.
Christie Gross is the patient advocate who wrote SB 139, Delaware’s Fertility Care and Preservation Bill.//photo by jim coarse
From the contraception access organization assisting thousands of women statewide to legislation expanding access to birth control and in vitro fertilization (IVF) insurance coverage, Delaware is leading the way in coverage for family planning.
In June 2018, Delaware became the 16th state to mandate fertility coverage and the fourth state to cover fertility preservation when Gov. John Carney signed SB 139, Delaware’s Fertility Care and Preservation Bill, into law.
The bill requires that health insurance offered in the state provides coverage for fertility care services—including IVF procedures—for individuals who suffer from a disease or condition that results in the inability to carry a pregnancy to a live birth.
Though there are still out-of-pocket costs associated with acquiring donor embryos, eggs and sperm, this coverage removes a massive financial obstacle for a growing number of families who need medical assistance to have a child.
Newark resident Christie Gross is the patient advocate who wrote the bill. Gross led the grassroots campaign and united fellow patients, physicians and community advocates while inspiring them to stand up for Delaware fertility coverage.
Through her own experience with infertility, Gross says she saw something she felt needed to change, and luckily, she had the professional experience and connections to do something about it.
For the past decade, Gross has run the public policy firm, My Campaign Group, which specializes in crafting public policy solutions for candidates and elected officials nationwide.
“Our diagnosis ultimately made me aware of the financial, emotional and physical challenges families like ours face,” she says. “We are among the luckier families to have had a $30,000 lifetime benefit for fertility care through my husband’s employer-sponsored health plan that allowed us to initiate treatment. However, we quickly learned that even with coverage, we would still be required to pay thousands of dollars in out-of-pocket for services.”
This realization caused her to question what Delaware families with even less coverage or no coverage face in their quest to build a family upon receiving an infertility diagnosis.
While undergoing treatment, Gross began researching fertility care access and learned that 15 states had laws requiring insurers to cover or to offer coverage for fertility care services, but Delaware wasn’t one of them.
This discrepancy existed despite the fact that the World Health Organization, the American Medical Association and the American Society for Reproductive Medicine define infertility as a disease of the reproductive system, and like other diseases, should be covered by health insurance.
Gross met with patients, physicians, nonprofit stakeholders, and colleagues in state politics to discuss this issue and seek guidance in crafting legislation.
“I relied on national best practices and input from state reproductive endocrinologists to develop the first draft of the bill,” she says. “I found myself in House Majority Leader [Valerie] Longhurst’s office in December 2016, and she immediately saw its merits and offered to become a prime sponsor.”
Gross knew from experience that if the bill had any chance of passing, it would also require a strong advocacy component. With the help of volunteers who provided their marketing and social media expertise, they built a strong patient advocacy community to write letters, call their state representatives, and testify in support of the bill.
However, from working in politics for nearly two decades, Gross realized confidence is premature until a campaign is won, a law is enacted, or a policy is implemented.
“Even though House Majority Leader Longhurst agreed to sponsor my bill, the 2017 legislative session was not favorable for pursuing action,” she says. “Control of the State Senate was up for grabs and important budget negotiations meant the bill would have to wait.”
Toward the end of the 2017 session, she worked with colleagues to encourage State Sen. Bryan Townsend to also add his name as a prime sponsor to the bill. This resulted in the bill being officially filed in June 2017, allowing them to move forward with the research and support phase in preparation for the bill being heard during the 2018 legislative session.
Throughout the next several months, the bill received much national and local attention, with many medical associations wanting to provide input on the bill’s substance.
Part of the challenge was that no state had passed a fertility care law in the past 13 years, and much had changed in that time with new medical technologies resulting in higher success rates. Delaware was also the first state to write a fertility care and fertility preservation bill into a single-piece of legislation.
Gross says she encountered several obstacles along the way.
“Because work on the bill sometimes required all of my professional time, I had to lessen my client workload and sacrifice a paycheck to do what was needed to move the legislation forward. In the end it was worth it because we became parents in November with the birth of our son and the law means that others will be given the chance, too.”
Gross says the fight to expand fertility care and preservation coverage isn’t over just because Delaware’s law was enacted.
“There are still many Delaware families not covered by this law, as state mandates only apply to employers who purchase coverage in Delaware and have more than 51 employees,” she says.
DR. RONALD FEINBERG, MEDICAL DIRECTOR OF IVF PROGRAMS AT
Companies that self-insure aren’t required to automatically adopt this coverage for their employees, as the federal government regulates them. This includes many government entities, including the state, counties and city of Wilmington.
“I would like to see more of these employers follow the lead of state policymakers and voluntarily add or expand coverage for their employees, and I am doing what I can to encourage them,” Gross says.
Dr. Ronald Feinberg, medical director of IVF programs at Reproductive Associates of Delaware, also testified for the bill, sharing his more than 30 years of experience to speak about the ethics of expanding access to care for people who need medical services to build their families.
Feinberg attests that SB 139 wouldn’t have become a reality without Gross’ leadership and expertise.
“While other patient advocates have approached us in the past about spearheading an effort to create a fertility mandate in Delaware, they quickly realized how difficult the process actually can be,” Feinberg says. “While our group did contribute many hours of time to advise Christie with her efforts, that paled in comparison to the time she devoted to SB 139.”
Other states like Pennsylvania and New York have had trouble passing fertility mandates, and before Delaware, no state had successfully passed such legislation in many years, he says. Delaware was fortunate to have a legislature with the right combination of empathy, intelligence and bipartisan cooperation with the clear goal of helping Delaware citizens build families.
Feinberg says based on experience and utilization in other states that have fertility mandates, it’s likely that SB 139 will provide greater access to family-building treatment options for Delawareans.
“We never turn any patients away who wish to learn about their fertility care options,” he says. “However, the combined cost of assisted reproduction medical treatments and medications can be prohibitive for many people. When people become informed about their treatment options, as well as the cost and chance of success, they can then decide for themselves how to prioritize their family-building goals.”
A STATE LEADING IN FERTILITY CARE
Feinberg says over the past 30 years he has been privileged to witness one of the greatest medical advancements for mankind with the development of assisted reproductive technologies. Since IVF started in the United States in the early 1980s, success with this fertility treatment has increased by 1,000 percent.
Combining single embryo transfer with pre-implantation genetic screening allows for cumulative pregnancy rates that exceed 80 percent, he says. Feinberg also notes that Reproductive Associates of Delaware has stellar success because many IVF clinics fail to treat the underlying disease, like endometrioses, which can have a dramatic impact on improving IVF success rates.
“We have a unique combination, a ‘secret sauce’ if you will, of utilizing restorative minimally invasive outpatient surgeries combined with highly effective single embryo transfer,” he says.
Delaware Institute for Reproductive Medicine is another clinic on the leading edge of fertility medicine. For more 30 years, center director Dr. Jeffrey Russell helped thousands of couples realize their dreams of starting or increasing their family.
In the late 1980s, Russell successfully began and produced the first IVF, frozen embryo, gamete intrafallopian transfer (GIFT), zygote intrafallopian transfer (ZIFT), host uterus and donor egg, embryo and donor sperm births in Delaware.
Dr. Jeffrey Russell sees this field of work as tremendously exciting with dramatically ever-changing technology. //courtesy of delaware institute of reproductive medicine
After studying the new single sperm injection techniques in Belgium in the early ’90s, Russell also produced the first intracytoplasmic sperm injection (ICSI) pregnancy in the Mid-Atlantic region.
His innovative research has resulted in the first immature egg pregnancy in the U.S., the second pregnancy of its kind in the world. He was the first to provide genetic testing on embryos (PGT) for genetic disorders, as well as family balancing options for couples in the area.
Russell sees this field of work as tremendously exciting with dramatically ever-changing technology. He says in the earlier days of IVF, the embryo transfers were only 10 to 20 percent effective.
“We’d transfer so many hoping one would take,” he says. “Sometimes we’d have complications from too many babies, but more often, none would attach at all.”
But now that doctors have learned to time embryo implantation with when the uterus is ready, and is able to use only one embryo with precise pinpoint timing.
Another advance, Russell says, is the ability to a take 5-day-old embryo—or blastocyst—and do full chromosomal genetic testing. Now, the multiple rates have dramatically dropped as doctors can screen and then transfer the best-tested embryo at the best time.
In fact, he says, with the refined technology, they can even look for specific genes in embryos. For instance, they can try to avoid transferring an embryo with a BRCA gene to a mother with a genetic predisposition for breast cancer.
In terms of the new fertility coverage legislation, Russell isn’t sure how much of an effect he will see as many large companies in the state are self-insured, which precludes them from the mandate. But he certainly hopes the insurance companies will appreciate this precedent and offer the coverage to allow more couples access to fertility care.
BETTER ACCESS TO REPRODUCTIVE CHOICE
On the other side of family planning is the difficulty in managing unplanned pregnancies. Liz O’Neill, director of Delaware Contraceptive Access Now (DE CAN) Upstream USA—a comprehensive, statewide plan increasing access for all women in Delaware to the full range of contraceptive methods—says out of 6 million pregnancies each year in the United States, half are unplanned. And in Delaware, 57 percent of all pregnancies were unplanned, higher than the national average.
“Unplanned pregnancy can have negative health effects for women and their babies, including delayed prenatal care, premature birth and postpartum depression,” O’Neill says. “These outcomes are associated with increased health challenges over the course of a child’s life and higher dropout rates among young mothers.”
Since the passage of the Affordable Healthcare Act, most health insurance plans are required by law to cover birth control at no additional cost. However, some grandfathered plans still don’t cover birth control.
But Delaware’s Gov. Carney recently signed new legislation to strengthen birth control coverage. SB 151 Birth Control Insurance Bill codifies the ACA’s birth control benefit in state law by requiring insurance plans, including Medicaid, individual, group and state employee health plans to include coverage for contraceptives with no cost sharing to the insured individual.
Still, health centers and the women they serve face significant barriers to accessing the full range of contraception, including untrained health providers, outdated workflow, billing and administrative systems, lack of transportation and needing to schedule multiple appointments.
O’Neill says “best-in-class” health care means that women are offered the full range of contraception, including the most effective IUDs and implants. Too often, IUDs and implants (otherwise known as long-acting reversible contraception, or LARCs) aren’t offered because of barriers at the health center level.
“IUDs and the implant are 20 times more effective than other methods, but only 12 percent of women use them,” she says. “And only 30 percent of community health centers provide same-day access to the full range of contraception.”
Launched in 2014, DE CAN strives to improve public health by empowering women’s family planning choices. The initiative works within the entire healthcare system by training clinicians on how to place and remove IUDs; providing training on how to properly bill, code and stock all forms of contraception so they can be offered same-day and at low or no cost to patients; training providers to start a conversation about contraceptive needs at all visits; and training all levels of health center staff to provide patient-centered contraceptive counseling free from bias and coercion.
O’Neill says DE CAN has 42 partnering agencies that represent 185 sites across Delaware. To date, more than 2,700 clinicians and staff have been trained, and their health center partners have served thousands of women in Delaware.
“DE CAN believes that empowering women to choose when and if they want to become pregnant should be a central part of efforts to expand opportunity for women, children and their families,” she says.