Angelina’s breast surgery possible in India, but there’s a catch
by G Pramod Kumar May 15, 2013
Hollywood actress Angelia Jolie’s bold act of removing both her breasts to prevent cancer, and her subsequent decision to publicise that, has led to a sensational excitement among women across the world, including in India.
Her disclosure was immensely empowering to women on two counts: one, it spread awareness of cancer-prevention and two, reassured breast cancer patients who dread mastectomy for the fear of disfigurement and loss of sex appeal.
“If a hugely desired stunner like me can stay as sexy and as desired as before, you can do it too” seems to be Jolie’s message. She said she would look the same except for some minor scars. But the life-affirming change for her is that her cancer risk has come down to less than five percent from a formidable 87 percent.
To recap, what Angelia Jolie did was test for a faulty gene (BRCA1) that raised her risk of breast and ovarian cancer. Her test was prompted by the fear that she might be genetically susceptible to breast and ovarian cancer because her mother died young of cancer. The test for the BRCA1 gene in her was positive and doctors told her that she indeed had a very high risk of contracting the illness. To prevent it, she underwent mastectomy (surgical removal of the breast).
Mastectomy is a routine procedure in breast cancer, but in Jolie’s case she didn’t wait for the cancer to manifest, and did the surgery to pre-empt it. In her message to women across the world, she advised them to find out their risks by doing the gene test and exercise the preventive options available to them.
Sounds like a breakthrough idea because breast cancer is the most common cancer in urban India and accounts for about 25 to 35 percent of the country’s cancer burden in cities. In addition, the average age of breast cancer patients is also coming down from 50-70 years to 30-40 years. If there is a possibility of getting tested and acting early, it is certainly empowering and life-affirming.
The gene Jolie talked about was BRCA1 (breast cancer 1) and there is one more that makes women susceptible to breast and ovarian cancer – BRCA2 (breast cancer 2). If these genes are damaged (BRAC mutation), then you will be at risk of contracting breast and ovarian cancer.
However, such an anomaly accounts for only five to ten percent of breast cancers – don’t get hyper anxious if your mother or somebody else in the family has had breast cancer. One can have a mutation in either one of the genes or both. Jolie had it only in one (BRCA1).
Several studies have shown that BRCA1 and BRCA2 mutations do exist in Indian cancer patients.Till 2003 there were no reports of Indian families with such mutations when this research detected nine cases in a controlled sample of 90 women which included ten breast cancer patients. Significantly, a 2009 study in south Indian patients showed a BRCA mutation of 28 per cent, indicating that this test is indeed valuable for early prevention.
So can we test in India and gain from the same treatment privilege that Jolie had?
Surely yes.
The new generation labs do test for both BRCA1 and BRCA2 mutations. One can ask for a test for either of the genes or both. It’s roughly about 60,000-plus for both and about 30, 000-plus for one. Compared to the prices in the US (US $3,000), it’s much cheaper – roughly one-sixth; but according to available information, the tests can be done for about US $ 200.
So far so good.
The test is great and although it’s expensive, it’s available in India. Not bad.
But the real story is more sordid than what it appears to be in the US.
In the US, both the genes as well as the diagnosis are patented by a company called Myriad Genetics, which means that only labs licensed by Myriad, and NOBDOY ELSE can do the test. The implication is that for an illness of such fear and consequence, you cannot have a second test elsewhere or have a second opinion. In simple terms, it is like doing a diabetes test in the same lab and not being able to repeat it elsewhere to see if the diagnosis is correct.
This monopoly has led to a moral and legal battle in the US. In 2009, cancer patients supported by the American Civil Liberties Union went to a Federal Court in New York, which said the patents were invalid. An appeal court, however, overruled the decision and finally the case landed at the Supreme Court last month.
In other words, Myriad still has the patents which have been contested in the Supreme Court since mid-April.
Many of the judges hearing the case were clearly opposed to the patents awarded for “merely isolating a gene” while some were concerned that an adverse decision can impact future research. The Obama administration, hailed for health reforms in the country, curiously stayed neutral.
Reports indicate that the court might finally make a compromise ruling that will be against Myriad’s BRCA gene patents, but still permit genes that are synthetsised (non-naturally occuring genes that are synthetically created). The US Trademark and Patent office has so far awarded 4000 human gene related patents which preclude a lot of gene-related research because a patent on a single gene can prevent research on several other genes.
For instance, Myriad argues that any gene with 15 nucleotides of the BRCA belongs to them. Apparently, the nucleotides appear in 689 genes related to various body functions including that of the brain and the heart. If Myriad wins the case, it can impact not only genetic research, but diagnosis and treatment of illnesses related to them as well. In America, about 40 percent of our genes don’t belong to us, but to corporations.
In an article in Washington Post, two reputed academics argued that the case was a chance for the Supreme Court to rectify this “genetic injustice”. They said the genes of the human genome, like other natural body parts, belonged to their owners, not to companies seeking to exploit monopolies.
“If the court allows these types of patents to stand, it will put the endeavors of openly researching, preventing and treating lethal diseases on a lower level of importance than a set of ill-conceived property rights,” they said.
Fortunately in India, the BRCA genes are not patented and hence the tests are available exactly the way generic copies of non-patented or patent-expired drugs are available.
However, there is no protection against such patents in the future. The amended Indian patent law does have lacunae that permit such patents, mostly because it borrowed legal-language from developed countries and the patent office has signed MoUs with them.
Analysis by activist-researchers KM Gopakumar of Third World Network (TWN) and Visalakshi of (CENTAD) shows that the Indian patent office has indeed granted several patents on genes. The researchers are currently analysing suspected gene patents for follow up action
While encouraging women to future-proof their lives, Angelina Jolie although hasn’t told us about these intrigues, she does make a reference to the cost and access.
“It has got to be a priority to ensure that more women can access gene testing and lifesaving preventive treatment, whatever their means and background, wherever they live. The cost of testing for BRCA1 and BRCA2, at more than $3,000 in the United States, remains an obstacle for many women,” she wrote in her article.
So yet again, it is a case of access-to-treatment Vs profit-hungry Big Pharma.
It’s high time that politicians and policy makers in India are aware of the complexities of this game. Supporting innovation in life sciences and biotechnology should not be at the cost of human lives. Had our politicians been careful at the time of amending the Patent Act, we would have been on a more certain wicket.
We are still not late. We should apply Angelia Jolie’s principle of prophylactic mastectomy to our Patent Law.
http://www.firstpost.com/living/angelina-jolies-breast-surgery-possible-in-india-but-theres-a-catch-784685.html
‘In India, even cancer patients don’t want to undergo mastectomy’
by Pallavi Polanki 29 mins ago
New Delhi: Hollywood actress Angelina Jolie’s decision to go public about having undergone preventive breast cancer surgery has received massive public attention and has been welcomed by women who share her predicament of having a family history of breast cancer.
Risk of breast cancer is a growing worry for women in urban India, given that the number of reported cases has been rising in recent years.
Do doctors in India recommend preventive double mastectomy to patients? And how open are women in India to such a procedure?
Revealing the extent of the stigma attached to mastectomy in India, Deepa Thayal, senior consultant, breast cancer surgery at Delhi’s Fortis La Femme says, “In India, mastectomy is a big stigma. So much so, even patients who are diagnosed with cancer don’t want to opt for it. They accept it with great difficulty. Opting for preventive surgery is, therefore, not something that can happen in the Indian scenario easily. Besides, the feeling among patients is that when they don’t have cancer, why go for such an extensive surgery.”
Image used for representational purposee only.Reuters
Single mastectomy could cost between Rs 70,000 to Rs 2 lakh, depending on the hospital, say doctors.
Asked whether the stigma among Indian patients also had to with unstated pressures from the family, Tayal said, “It seems so. Although, none of my patients have has said so to me. In India, women are not always very secure. They are dependent on their families and thus feel more insecure. They tend to believe that this could create problems for them.
“Patients whose families are supportive are a lot more comfortable going in for surgery. And patients where families are not seemingly supportive are more reluctant about their treatment. Patients say, for instance, that they don’t want to go in for chemotherapy for fear of losing their hair. But mostly, the stigma is self-inflicted, it is in the mind of patients.”
The second reason why the procedure was not so well-known, say doctors, is because the gene test –prerequisite for the surgery –was not commonly recommended by doctors in India.
The presence of BRCA1 and BRCA2 gene is associated with higher risk of breast and ovarian cancer. The test doesn’t come cheap and patients have to be thoroughly counselled before undergoing the test. (The cost of gene test varies from lab to lab and according to doctors ranges between Rs 5000 to Rs 20,000).
Rupinder Sekhon, a senior consultant, surgical oncology, at Delhi’s Rajiv Gandhi Cancer Institute & Research Centre, describes the test as being “controversial” because the absence of the BRCA1 and BRCA2 gene doesn’t necessarily rule out the possibility of the patient getting breast or ovarian cancer. “There are some doctors who do not recommend this test at all because it unnecessarily exposes patients to stress. The gene might be there but the patient might not develop the cancer at all and having the gene doesn’t mean the patient is going develop the cancer,” says Sekhon.
Asked under what circumstances the test was recommend in India, Sekhon said, “We advise this test only in very young patients when they have a strong family history of cancer. In cases where, say, the mothers, the sister, the aunts, have all had cancer. In such situations, we advise doing the test. And there too, it is with certain amount of caution.”
Tayal says presently the test is mostly done if the patient demands it. “Right now, we are doing the test on the patient’s or family’s demand only. If a patient has a strong family history of breast or ovarian cancer, then we advise them to go for BRCA1 and BRCA2 test for first degree relatives,” says Tayal.
On the advice she would give women who were concerned about the risk of breast cancer, Tayal says, “If you don’t have a family history, you could do a preventive screening (mammography) at the age of 35, that is the baseline age. And after 40 years of age, you should go for regular mammography after every two-three years. And patients who have a family history of cancer, should do a mammography every year. Start self-breast examination from the age of 20. And if you should find anything unusual, immediately consult a doctor.”
Prevalence of breast cancer, say doctors, in India is 9-10 percent of population. But the incidence is more among urban than rural India. “In urban India, every 8th woman per 10,000 has chances of developing the disease, while in rural India, every 27th women per 10,000 has chances of developing the disease. The risk is almost three-fold higher in urban population.”
http://www.firstpost.com/living/in-india-even-cancer-patients-dont-want-to-go-for-mastectomy-786901.html