Lindsey Sachs’ birth certificate says he was born female, but his whole life, he’s considered himself a male.
He has become so uncomfortable with his female body parts, and disillusioned with his inability to get them removed, that his life has been put on hold. Debilitating social anxiety and intense physical discomfort have prevented him from finishing school, keeping a job or achieving his dream of starting a transgender support network in Sonoma County.
The transgender Santa Rosa man has been altering his body chemistry and physical attributes, hoping to reflect a male appearance, for nearly a decade. He injects testosterone into his thigh twice a month, and flattens his breasts with a chest binder.
When President Barack Obama’s health care law expanded Medi-Cal last year for low-income adults who don’t have children, Sachs qualified for new insurance coverage. Overnight, sex reassignment surgery became a possibility for the first time in his life.
“I have felt really depressed and isolated for so long, because my gender doesn’t reflect who I am on the inside,” said Sachs, 30. “So when I found out that I could finally get surgery, I was so excited.”
Sachs said he felt relief from depression and anxiety for the first time in his life. In order to complete his female-to-male transition, he had to find a team of specialists to perform a batch of surgeries, from common procedures including a mastectomy and a hysterectomy to more complicated and specialized surgeries, such as genital reconstruction. He chose to begin with his breasts, the primary source of his discomfort. But since January 2014, when Sachs qualified for free coverage under California’s low-income health program, requests for his surgery have been denied.
Although California requires Medi-Cal and private insurance companies to cover body-altering surgeries for transgender people, the health plan that covers the majority of Sonoma County’s Medi-Cal patients has prevented Sachs from accessing specialists to perform the surgeries he desires.
For low-income patients, navigating the path to surgery in the ever-changing health care landscape can be tricky. A shortage of competent specialists trained in transgender-specific health care, combined with the influx of people newly eligible for coverage, can force patients seeking surgery to wait a year or more. Ideally, patients should wait no more than two weeks for a first appointment with their surgeon, according to doctors and physicians groups.
Transgender patients also are routinely forced to file complicated appeals with insurers and state regulators to get procedures covered, and they frequently pay out of pocket, according to more than a dozen interviews with transgender advocates, health officials and doctors.
Complicating matters further, the reimbursement rates doctors are paid by Medi-Cal are famously low. Take, for instance, the price tag for a mastectomy and chest reconstruction at one East Bay clinic. Medi-Cal pays the plastic surgeon $220 for the three-hour surgery, while out of pocket, it would cost $5,000. Because of low payments like that, many specialists simply decline to accept Medi-Cal, exacerbating the shortage of doctors available to see transgender patients who want surgery.
“This is supposed to be covered, but the truth is, it’s not working,” said Dr. Dawn Harbatkin, a primary care physician with Lyon Martin Health Services, a community clinic in San Francisco whose patients primarily identify as lesbian, gay, bisexual or transgender. “For surgeons who can perform these surgeries, there is really no motivation for them to take the low Medi-Cal rates because the pay is so low, and they have more than enough business.”
Insurance companies do not disclose Medi-Cal rates they pay physicians because it is considered protected information, but the reimbursements are low throughout California, and the problem exists for a range of health treatments, health policy experts said. For sex reassignment surgeries, out-of-pocket costs can range from $5,000 for a mastectomy to $100,000 for highly specialized genital reconstructions, doctors said.
Insurers, which must cover a range of transgender-related health benefits including surgery, are adapting their business practices as they implement new requirements under the Affordable Care Act, according to health and insurance officials. While health plans still regularly deny treatment for transgender patients seeking newly covered sex reassignment surgery — which can be complex and expensive — experts said companies are slowly changing their policies and expanding their networks to be more inclusive.
The problem is relatively new. Before January 2014, subsidized coverage under Medi-Cal was available only for low-income people with children and people with disabilities. Under Obamacare, Medi-Cal expanded to cover low-income adults without children. Transgender people without kids became newly eligible, requiring insurance companies to cover the increase in patients seeking treatments under regulatory requirements. The evidence of an increase in new patients seeking surgery is mostly anecdotal, but the influx has been extreme, according to primary care doctors and surgeons who said they’ve seen heavy increases in patient loads in the past year.
“We have seen such a dramatic shift, and a massive increase, since health reform,” said Dr. Curtis Crane, a leading San Francisco surgeon specializing in female-to-male surgeries. “It’s happening so rapidly.”
California is one of nine states, along with the District of Columbia, that have enacted rules barring Medicaid from denying medically necessary treatment for transgender people. State lawmakers in 2005 also passed legislation requiring private insurance companies to cover transgender care, removing blanket exclusions of coverage based on gender identity or gender expression.
Under the law, patients become eligible for treatment if they are diagnosed with gender dysphoria, a term that describes a mismatch between someone’s gender identity and their sex determined at birth. Medicare also must cover body-altering surgeries for transgender people under rules outlined in a May 2014 federal ruling that overturned a decades-old ban.
The number of people seeking these treatments is difficult to ascertain. A UCLA demographer estimates there are 700,000 transgender people across the United States — about 0.03 percent of the population — but experts point out that not every person who identifies as transgender wants surgery.
For thousands of people, surgery can be the only way to address debilitating physiological and mental health problems. Transgender people suffer disproportionately with depression and anxiety that can lead to suicide. For Sachs, suicide at times has seemed like the only option. He said his numerous health complications have imperiled his ability to retain a job or complete college because of what he calls a culture of discrimination.
On a recent day, sitting outside his family’s mobile home near the county airport, Sachs described his complications. He said he has been living openly as a man for nearly a decade, since the age of 21. Growing up in a religious family and bouncing around different schools all over Sonoma County, he said it took him years to realize he was living in a girl’s body.
“I didn’t know I wasn’t a boy until I was in kindergarten,” he said. “They were teaching us anatomy, and that’s when I knew my body was different. … For years I had people telling me, ‘No, no, you’re just a tomboy, maybe you’re a lesbian,’ but I just didn’t fit into any of those boxes.”
Although he has experienced some emotional relief as an openly transgender man, his daily life is still riddled with challenges.
“Testosterone helps me look how I feel, and sound how I feel, and just be more comfortable,” Sachs said. “But I feel so much social anxiety and just so uncomfortable in my body.”
Sachs has been fighting with his insurance provider and medical doctors to get his surgery covered for nearly 15 months. Despite following the prescribed path to surgery — being diagnosed with gender dysphoria and establishing his commitment to transitioning by taking testosterone and undergoing mental health evaluations — he has been unable to get his prescribed treatment covered.
Last year, Sachs received a referral from his primary care physician for an appointment with Crane, one of the top sex reassignment surgeons in the country. But the doctor didn’t accept Sachs’ form of Medi-Cal, under a managed care company in Sonoma County called Partnership Health Plan. Partnership is the health plan for Medi-Cal managed care plan beneficiaries in Sonoma County, where there are 90,000 members. Health plan officials said they cover more than 513,000 low-income people across its network clustered in Northern California — an increase of nearly 200,000 people since the launch of Obamacare.
Sachs got his denial letter in October from the office of Brownstein and Crane, the leading practice for female-to-male reconstructive surgeries.
“The story is always the same,” said Sachs, pointing out that he’s been doing his own research to find surgeons, then handing over the information to his health plan’s referral department. “They sometimes took Medi-Cal, but not my kind of Medi-Cal.”
Robert Layne, director of government and public affairs for Partnership Health Plan, said the insurer covers sex reassignment surgery and other transgender health services that are not considered cosmetic. That includes psychotherapy, hormone therapy and sex reassignment surgery. The problem, Layne said, is that the health plan’s network does not include specialists trained to perform the surgeries. In those circumstances, Partnership will contract with specialists outside its network so members have access to surgery, he said.
“It’s really difficult to link people who are in the process of transitioning with specialists because there is such a shortage,” Layne said. “And there is no board certification for transgender-related reassignment surgeries, which does create a barrier to care.”
Layne said he was not familiar with Sachs’ case, but that in the past, Partnership has contracted with providers in San Francisco and Davis to provide its members with access to transgender-specific care.
“Partnership is known for providing high-quality health care for the safety net population, and I’m excited with what we’ve been able to accomplish under the Affordable Care Act,” Layne said. “In the future, we’re going to continue our progress.”
At present, Partnership members have access to two community clinics under Santa Rosa Community Health Centers that specialize in primary care for transgender patients — Vista Clinic and Brookwood Health Center, both located in Santa Rosa. Layne said the company is also looking to attract surgeons and other doctors to Sonoma County to close gaps related to specialty care for transgender people. At present, there are no doctors trained to perform the surgeries in Sonoma County.
Kate Burch, who oversees lobbying efforts on behalf of lesbian, gay, bisexual and transgender people for Health Access California, a health policy advocacy group in Sacramento, called the problem dire.
“People are entitled to this care, but they’re not getting it,” Burch said. “That leads to so many appeals for transition-related surgeries, and discrimination on the part of insurance companies.”
Medical experts and health advocacy groups painted a bleak picture for transgender people seeking sex reassignment surgery. Often, patients are forced to appeal denials from insurers with the health plan, and from the state. Provider shortages are made worse because transgender-related health care is a field of expertise that is not formally taught in medical school rotations or mainstream specialty training facilities.
Crane, the San Francisco surgeon, was trained in plastic surgery and urology, allowing him to perform chest surgeries on transgender men as well as more complicated genital reconstructive surgeries. He studied for 10 years in four different countries to develop his expertise.
The stark reality of provider shortages becomes clear when Crane and other doctors interviewed for this article are able to list the names and locations of the doctors who can perform sex reassignment surgeries with two hands or fewer. Crane tallied five surgeons in the United States, including himself, who specialize in genital reconstructive surgery for transgender men and perform the procedures on a regular basis. Another 10 doctors across the country specialize in chest reconstructions, he said, while estimating that another 50 or so doctors sometimes do the procedures.
Crane said the Affordable Care Act has created a dramatic shift at his practice. He is booked nine months out, and recently, he hired another surgeon specializing in sex reassignment surgery to ease his workload. He performs up to 10 surgeries per month, he said.
“It’s been incredible,” Crane said. “This is a very exciting time for the transgender community, with health reform.”
Crane said between 90 and 95 percent of the surgeries he performs are covered by insurance. Prior to Jan. 1, 2014, and the launch of the Affordable Care Act, insurance covered just 10 percent of his patients, he said, forcing them to pay out of pocket.
“There has been a medical, social and political movement to get these surgeries covered,” Crane said. “Word is getting out, and I feel so fortunate to be a part of it.”
Crane said, however, that his office’s denial of Sachs’ surgery is not rare.
“It’s part of the insurance maze, and it can be a nightmare,” he said. “There are doctors’ offices not willing to go to battle with insurance companies to fight long, complicated appeals processes to get these surgeries covered, and it’s unfortunate. But, I also understand. It’s time-consuming and it’s difficult.”
Crane said he does not contract with Medi-Cal, but he will negotiate with health plans under Medi-Cal for patients whose surgeries are approved as out-of-network procedures.
Experts said this field is rapidly changing along with the health care industry, and even with all of its complications and frustrations, there are successes. With millions of Californians armed with new health coverage, momentum is building to convince health insurance companies to accept responsibility of covering treatment for transgender patients. County health departments and elected officials increasingly are becoming part of the conversation, helping to identify ways of expanding health networks and attracting providers.
“All of this stuff is really new,” said Anand Kalra, health programs administrator for the Transgender Law Center, a legal advocacy group also based in San Francisco. “What we’re seeing is a huge shift in organizing at the county level, and people saying this is a priority can help put pressure on insurance companies and political bodies to increase access to care.”
That strategy worked in San Francisco, where surgeons accept Medi-Cal patients under two health plans. In Sonoma County, supervisors and health officials have endorsed expanding coverage, but said concerns have not risen to their level.
“We haven’t heard of or received any complaints,” said Rita Scardaci, the county’s health director, who also is on the board of directors for Partnership Health Plan. “But if anyone is having trouble getting the care they need, they definitely can call the health department and we will try to link them with a solution.”
Board of Supervisors Chairwoman Susan Gorin and Supervisor Efren Carrillo, the county’s health liaison, both said they would support a move in Sonoma County to raise Medi-Cal reimbursement rates so transgender patients would have greater access to surgery.
Meanwhile, Sachs is continuing to call surgeons and raise money in an attempt to pay for a mastectomy and hysterectomy out of pocket.
“I don’t think I could ever pay that much out of pocket — I just don’t know if it’s an option for me,” he said. “I feel like I’ve had false hope for more than a year, but I’m going to keep trying.”