Angelina Jolie's announcement that she underwent a double mastectomy to protect against a genetic form of breast cancer inspired widespread surprise and admiration. With her op-ed revelation in the New York Times, she put herself forward as a role model for millions of women who face a similar dilemma. Such candor and forthrightness are rare among celebrities.
Yet, she is extremely fortunate in one respect. She has the financial resources to afford both the testing that found her heightened risk and the consequent surgery. As she noted in her op-ed, many women do not.
The test can cost more than $4,000 and the surgery many times that. Insurance coverage varies widely. Many women do not find out they have a defective gene because they cannot afford to. And if they do find out, they cannot afford protective steps like surgery.
Why does the test cost so much, and what can be done about it?
Only one company conducts the test. That is Myriad Genetics, a firm based in Utah, which holds patents on the genes involved. The patents prevent any other company from offering the test and leave Myriad free to charge almost whatever it wants.
Two genes are involved and are known as BRCA-1 and BRCA-2. Certain mutations in one or both raise the risk of breast and ovarian cancer. Jolie's test found a mutation in the BRCA-1 gene.
The increased risk is significant. While estimates vary, women with defects in their BRCA 1 or 2 genes face at least a 60% lifetime risk of breast cancer, about five times higher than the rest of the population. They face a 15% to 40% lifetime risk of ovarian cancer, which is more than 10 times higher than others.
Each insurance companies sets its own criteria for covering the test. Reimbursement may depend, for example, on whether the patient has had cancer in the past or has a family history of it. If the criteria are not met, the patient must pay out of their own pocket, even if a doctor recommended the test.
Myriad says that most patients whom it tests have insurance coverage and only have to contribute a co-payment of about $100. It offers financial assistance for some others. However, this does not take into account the patients who never seek testing because it is not covered or because they lack insurance entirely.
But that is about to change. Under health reform, insurance policies must cover basic preventive services with no co-payment. The federal government recently clarified that this includes all physician-recommended BRCA testing along with counseling related to it.
Obamacare will also prevent insurance companies from denying coverage to women who carry BRCA mutations. Starting next January 1, they may no longer use that or other preexisting conditions as the basis for refusing to issue policies or for setting the price.
In a separate legal front, a pending Supreme Court case may bring down the price of future genetic tests. The Court is considering a challenge to all patents on human genes, including Myriad's, on the ground that they are products of nature to which no one should have exclusive rights. A decision is expected in June. If the Court invalidates gene patents, market competition could hold future prices in check.
Jolie's op-ed may help to encourage more openness by public figures to inspire others to seek needed care. That could serve as a lifesaver for some.
It also serves as a reminder of the importance of public policy in assuring access to care for those who seek it. A Supreme Court ruling that changes the law on gene patents could make some health care services more affordable. And Obamacare will help to assure that everyone can receive them regardless of the cost.
All of which serves as a welcome development on several fronts.