BRCA Choices Not Affordable for Many US Women
Angelina Jolie's public announcement of her decision to undergo a double prophylactic mastectomy after learning she was positive for a mutation in the BRCA1 gene has certainly put genetic testing squarely into the limelight.However, her story has also caused a ripple of backlash across the Internet, exposing the realities of many US women who have little choice on the issue, especially if they do not have the health insurance, the money, or the means to undertake a series of extended medical procedures.
Several posts have expressed sadness, anger, and resentment over the media storm surrounding Jolie. Although people appreciate the difficulty of making such a decision and the courage of going so public with it, they also bring attention to the other side of the story.
"The bigger issue is that many women in America simply cannot afford to be sick," says one blogger, writing in Salon.com. "The issue of affordability has been swept under the carpet. The media has instantly polarized the debate in terms of women who may or may not entreat medical intervention. "
In a commentary published in the LA Times, writer Robin Abcarian notes, "Unlike Jolie, most people do not live in a world where cost, even to save one's life, is no object." She commends Jolie for sharing her story, adding, "It would be a lovely thing if everyone had access to the high level of care she has received."
Some of the articles took a stronger and more acrid tone. A teacher in New Jersey, also with a strong family history of cancer, reported that Jolie's account "upset me."
"That's good for her; she's got the best health care and she's got money. She doesn't have to worry about taking off of work. She doesn't have to worry about taking care of her family, cooking or cleaning — the things that the normal woman would have to do," she wrote.
Disparities and Dangers
Disparities in access to healthcare is not a new revelation — it is an issue that has been at the political forefront in the United States — and with no real solutions at hand, Jolie's story has served to amplify that rift.There are an estimated 940,000 BRCA mutation–carriers living in the United States, but only about 10% are aware of their status, commented Lisa Schlager, vice president, Community Affairs and Public Policy at FORCE, a national nonprofit organization focused on hereditary breast and ovarian cancer. "While there are multiple factors involved, many of the women simply can't afford to find out," she told Medscape Medical News.
"That is unfortunate, as this is the direction where medicine is going," she commented in an interview. "We have the ability to use this information to customize and personalize care, and we are hindering this progress."
"We need to explain that this is not an easy surgery," she said. "This is not the same as getting a breast enhancement. Things can go wrong, there can be significant complications, and recovery can take a while."
It is also not a 1-step deal to remove and reconstruct the breast, and in fact, multiple surgeries may be needed during reconstruction, to reach the desired effect. "We don't want to scare women away, we just want them to go into it with their eyes open," she said.
Jolie is not the first celebrity who has spoken openly about opting for double mastectomies. Actress Christina Applegate was diagnosed with breast cancer at age 36, and after finding out that she was positive for the BRCA gene mutation, opted for a bilateral mastectomy. But she already had a cancer diagnosis, whereas Jolie's surgery was prophylactic.
The dilemma of whether or not to undergo the procedure is illustrated by a story from the United Kingdom in which a popular television presenter, Kristie Allstrop, has talked about her family history of breast cancer and her decision to opt for monitoring (for now), whereas her sister Fiona decided to undergo a double prophylactic mastectomy. Although Fiona had tested negative for the BRCA1 and BRCA2 genes, medical experts believed that, given the family's medical history, she probably carried a yet unidentified mutant gene, according to press reports.
Expensive Process
The whole process of counseling, genetic testing, and any preventive actions taken as a result of testing is expensive.For a start, the cost of the BRCA test alone is about $4000. Preventive surgery and more frequent screenings can be prohibitively expensive, even if a woman does have insurance. Especially with surgery, indirect costs, such as those associated with taking time off from work and childcare, also need to be figured into the equation.
But there is an upside to the story. Although genetic counseling, testing, and preventive options will continue to remain out of reach for many women in the foreseeable future, there are options, and the tide may slowly be shifting.
Many insurers will cover the cost of prophylactic mastectomies, according to Jen Flory, JD, "although it often takes filing both an internal and external appeal to get it."
"The BRCA testing itself should be covered by any plan started after March 23, 2010, as Health and Human Services has found this to be one of the mandatory free preventative care measures covered under the Affordable Care Act [ACA]," said Flory, who is director of the Cancer Legal Resource Center, Los Angeles, California. "Older insurance companies generally charge a co-pay or coinsurance for the test."
Schlager noted that in her experience, most major insurers will cover genetic counseling and testing, provided that the patient meets the guidelines set by the National Comprehensive Cancer Network (NCCN). "The guidelines are very specific...as far as personal history or family history. So if you don't meet them, you probably won't be covered," she added.
When it goes into full effect, the ACA will at minimum provide genetic counseling to certain persons and their families, she added, although there are some caveats. "Men do not qualify for BRCA testing under the ACA," Schlager said. "And Medicare will only cover it if you already have cancer."
The rationale for that, believes Schlager, is that genetic cancers tend to strike at a younger age, and Medicare is dealing with an older population. "But still, it would be good to be identified as a carrier, as that would be important information for the family," she said.
Medicaid coverage is also restrictive, and coverage of the test varies state by state, according to Flory. "Those that cover it generally have stringent risk factors and cover it on a once-in-a-lifetime basis."
Myriad Genetics, currently the only company offering testing for the BRCA gene, also offers free testing for low-income women and those without any insurance. They have very stringent eligibility criteria, Schlager pointed out, but it still is an option, and many women can get tested that way. As previously reported by Medscape Medical News, Myriad has been enmeshed for several years in a legal battle over its patent rights to the BRCA genes, and the case is currently being deliberated by the US Supreme Court. Oral arguments were heard on April 15, and a decision is expected this summer.
Prohibitive Costs
But once a woman has received genetic counseling and opted for testing — then what?Information is a scary thing if you can't do anything with it," said Schlager. And for some women, that is where they will reach an impasse.
But unlike Jolie, women may be limited in their choice of plastic surgeons, depending on their insurance coverage. They may only be able to use surgeons within their insurer's network, for example, and some plastic surgeons do not take insurance at all. It can also be difficult to find a surgeon willing to take Medicaid, owing to the very low reimbursement.
In addition, health insurance will generally not cover everything. There could be co-payments and incidentals that can bring out-of-pocket expenses into the 5-figure realm. Schlager, who underwent prophylactic mastectomy herself in the late 1990s, notes that even though she was covered under a good insurance policy, over the years she has incurred about $20,000 in out-of-pocket expenses.
The cost of a prophylactic mastectomy, with reconstruction, can run upwards of $100,000 when the fees from the hospital, anesthesia, surgeons, medications, and incidentals are factored in. Add in possible complications, such as an infection, and the cost can easily double. On Breastcancer.org, where women in the forum have compared notes, they report having to pay between $10,000 and $25,000 in co-payments or fees that their insurance company will not pick up. One noted that her insurer only paid $6,500 of the $28,000 it cost for reconstruction, while another reported $40,000 in out-of-pocket costs because of her 20% co-pay.
Even surveillance can be costly. Mammograms are usually covered, and there are often low-cost options for those, commented Heather MacDonald, MD, assistant professor of clinical obstetrics and gynecology and breast surgery at the University of Southern California (USC), in Los Angeles. "But MRIs [magnetic resonance images], which are also recommended, are very expensive, and it can be difficult getting insurers to pay for them."
For women without insurance, options become even slimmer, and most would be unable to afford surgery. Although not the only option, even surveillance and chemoprevention can be beyond the means of many.
Perseverance and Ingenuity
Dr. MacDonald, however, is optimistic that with perseverance and ingenuity, many more people can have access to healthcare. With her colleagues, she runs a high-risk clinic at USC, where they offer a wide range of preventive options, including mammograms, MRIs, pelvic ultrasounds, medications, and surgical prophylaxis "if that's what patients choose.""There is a hodgepodge of programs that we can get patients enrolled in," Dr. MacDonald said in an interview. "We get creative, and it is rare that we don't have something that we can offer high-risk women."
She explained that they have a 3-year grant from the Avon Foundation and that the Medicaid program in California (known as MediCal) will pay for BRCA testing for eligible patients. "So as the Affordable Care Act expands MediCal, we will be able to get more patients covered."
"So this is very much going to be a state-by-state issue as to how patients are covered under the Affordable Care Act," she added. "We are lucky in California that MediCal will cover BRCA testing for patients who really need it."
The MediCal model is set up so that women see a genetic counselor, but many patients cannot afford or lack access to one. In such cases, there are guidelines that are published by the American Congress of Obstetricians and Gynecologists (ACOG) and the NCCN that give very clear criteria as to who may benefit from testing, Dr. MacDonald explained. "If those patients have a primary care doctor and fall within the guidelines for testing, then their primary care doctor can order the test for them."
Dr. MacDonald emphasized that it is far better to involve a genetic counselor because it is a complicated process, but if that option is not available, then a physician can coordinate it. "MedicCal will cover, based on the NCCN guidelines," she noted.
She is optimistic that women in other parts of the country can also receive assistance. "It can be done," she said. "It required dedicated personal and outside money, and Avon was the fifth organization that we submitted our proposal to before someone gave us a chance. Anyone in LA County is eligible to join our program."
Dr. MacDonald points out that the women who are most likely to struggle are those in small rural areas, where access to care may already be problematic. It may be harder to find a physician who accepts Medicaid, because providers in these areas can be few and far between. It is also more difficult to access large academic medical centers, which often provide services at low cost or free of charge.
"Finding providers to take Medicaid is a problem and will continue to be, but it will hopefully get better," she noted, adding that under the ACA, more women may be able to obtain health insurance, which will open the door to more options.
Medscape Medical News © 2013 WebMD, LLC
Send comments and news tips to news@medscape.net.
Send comments and news tips to news@medscape.net.
Cite this article: Roxanne Nelson. BRCA Choices Not Affordable for Many US Women. Medscape. May 23, 2013.
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