A killer disease has united two women living 3,500 miles apart. One is a sufferer, the other a surgeon. Until recently they were strangers, but a London-based networking group brought them together in the wake of a campaign that has now attracted the support of Afghanistan’s First Lady writes Glyn Strong (UK Progressive).
When a Kabul mob turned on a devout young woman and publicly beat her to death, the world was shocked; Farkhunda’s murder in March was frenzied, brutal and barbaric. Yet every year hundreds of Afghan women are killed by a stealthy, silent killer that attracts no international protest.
It is breast cancer, a disease that goes undetected and largely untreated in a country where routine screening is impossible and timely treatment, rare. Those lucky enough to be diagnosed while there is still hope have to go abroad to get specialist treatment.
Shinkai Karokhail, was one of them. The 53-year-old mother of four had to leave her home in Kabul, pay for treatment, undergo a double mastectomy and aggressive chemo/radiotherapy to save her life. She is still recovering, but Shinkai knows she is ‘one of the lucky ones’.
She is also an MP and one of the very few Afghan women willing to talk openly about this taboo subject.
“Even friends and educated people don’t want me to mention it, but I think now it is time to speak out and take steps to raise awareness and fight against cancer.”
Shinkai did more than talk; she initiated a breast cancer awareness campaign, picked-up and implemented by the Afghan Ministry of Public Health: “We founded a ‘Let’s Fight Against Cancer’ group to advocate for a cancer centre, and I invited the First Lady (Mrs. Rula Ghani) to lend her voice and support.”
Three and a half thousand miles away, another Afghan woman is fighting breast cancer, but in a very different way. Dr Zarghuna Taraki specialises in treating the disease at University College Hospital, in London although, like Shinkai, she was born in Kabul. The parliamentarian and the clinician have never met and live very different lives – but they are both Afghan women, both mothers and both passionately committed to tackling a disease that is needlessly killing thousands of people in their country
Zarghuna, whose UK patients have access to excellent treatment, said, “Cancer is a dark area in Afghanistan – not only breast cancer but all cancer – there is certainly no comprehensive awareness campaign. I was talking to some ladies back home and they asked me questions such as ‘Is it possible that a breast can develop a disease?’
“Most women in Afghanistan look to other women, their friends and families, for information. In the villages especially I don’t think they have any knowledge about the meaning of breast lumps or breast cancer – so they die without ever knowing the reason. This is very sad but it also makes it harder to learn how widespread breast cancer is when causes of death are unknown.”
Breast cancer is the most common cancer in women worldwide – it accounts for about 12% percent of all new cancers and 25% of all cancers in women.”
(The former Head of Kabul’s Malalai Hospital, Dr Nasrin Oriakhil (now Minister for Labour, Social Affairs, Martyrs and Disabled) was once quoted as saying, “There are no precise statistics for breast cancer in Afghanistan; however, we know that there are many patients. Just looking at our hospital, five of our employees have breast cancer and they do not have access to proper treatment.”)
We are sitting in a London café, not far from Warren Street tube station, doing what women the world over do – drink coffee, chatter and share cakes. Zarghuna, who speaks four languages, is telling me about her own struggle simply to practice as a breast cancer physician.
“It’s difficult to say why I became a doctor but I know that I really do want to help people, especially as, for women in Afghanistan you know, it’s not easy for them . . . but I never imagined that I would end up in the UK working as a doctor.
“My childhood was very colourful! I grew up in a big family – five brothers and a sister. My family was always supportive of me studying and my mother and father always told me that education was vital. Three of my cousins are doctors. We lived in Kabul but went on holiday to villages so I experienced city and rural life. Unfortunately the situation in Afghanistan got worse . . . so it was not such a hard thing for me to leave.”
Zarghuna qualified as a doctor in Moscow, returning home to work as an obstetrician/gynaecologist.
“But once again the situation in Afghanistan deteriorated and I fled the country. I came to the UK in 1998 with my small family, consisting of my husband and 18-month-old daughter.”
With only a few words of English and their old life gone Zarghuna and her husband had to pick up the pieces and start over. He had been a lawyer. She had been a doctor. It was a low point, but she recalls her husband’s words with a smile: “He said to me you still ARE a doctor!”
“I went to college to learn basic English, then intermediate, followed by high-level English for academic purposes. It was hard, because around this time I also had my second child.”
With the tenacity and courage of so many Afghan women Zarghuna passed her English exams and went on, once more, to qualify as a doctor, working her way up through a variety of clinical attachments, learning about health priorities and rising expectations about cancer treatment.
Clearly a compassionate and highly intelligent woman, Zarghuna cares deeply about her British patients, but part of her is always in Afghanistan, where things are very different, as Dr Karokhail discovered.
“I have tremendous respect for Shinkai Karokhail and what she has done,” says Zarghuna, “because it is not easy to speak about these things publicly there.”
When NATO formally ended its commitment to Afghanistan, after 13 years of conflict, the country that had dominated Western news channels for over a decade, slowly slipped off the international radar. “Our Afghan partners can and will take the fight from here,” said Commander ISAF, General John F Campbell at the departure ceremony. He was referring to insurgency and drugs, but in fact there were many other battles to be fought, against a background of shattered infrastructure and political uncertainty.
Former Medical Director of Kabul’s CURE International Hospital, Dr Jacqui Sinclair, left Afghanistan with her husband Eric in 2008 but remained in contact with colleagues. She welcomed the news that initiatives were afoot to tackle breast cancer adding, “It’s hard for Afghan women to qualify as doctors and they are almost exclusively working as paediatricians or in obstetrics/gynaecology. As it is not ‘appropriate’ for women to see male doctors, and there are no female breast surgeons, the situation is very depressing.”
After ISAF troops left, many NGO and charity workers followed. Foreign doctors who brought expertise increasingly became targets and several known to the Sinclairs were attacked and killed after they left.
Currently there are no public information campaigns about self-examination, or the screening programmes that would enable early detection and less invasive surgery; nor are there dedicated treatment facilities where the psychological and physical aspects of breast cancer treatment can be delivered side by side.
Afghanistan is a vast, landlocked country – extremely poor and heavily dependent on foreign aid. Its savage beauty may be breathtaking, but without a safe, effective transport network to traverse its challenging terrain, communities are isolated in every sense of the word. For women, denied the socio-economic freedoms of men, it is worse. Solutions that would work in more developed countries are irrelevant in Afghanistan where access and security challenges obviate even the deployment of mobile screening units.
But for a woman suffering from breast cancer, what happens on the global stage is an irrelevance. Her world shrinks to one circumscribed by diagnosis, prognosis and fear. The outlook for sufferers is bleak as Shinkai, despite her education, status and tenacity, discovered.
Conscious that she was an age group that elsewhere warranted routine breast screening she went to India for a mammogram. “We (in Afghanistan) have no such facility or system to take care of our health. In the beginning I was told that there was ‘some calcification’ but a later ultrasound result showed that all was normal.”
Still Shinkai had a feeling that something was amiss. “I felt I had the beginning of a cancer and a few months later I suddenly found that my left breast had changed in size a lot. I went to a doctor and, after a very unprofessional examination; she told me that nothing was wrong. ‘You are absolutely fine’ she said. I tried to convince her that I was sick but she refused to accept it.”
Pressed about the change in breast size Shinkai’s doctor said it was due to breast-feeding – 13 years earlier!
“Three months later, I went to the US and while there my nipple started bleeding. My friend, who is doctor, sent me for mammogram and ultrasound.”
On 8th October 2013, in the USA, she was diagnosed with aggressive, Stage 3 breast cancer and too ill, according to the American doctors, to go back to India for treatment.
For Shinkai the news that she was out of options was a heavy blow. “I felt like all patients, especially women, but the most depressing part was when I was told they had to remove both my breasts. It is difficult for a women to lose part of her body.”
Sadly, that wasn’t all she’d had to contend with. “The worst part was when the hospital refused to do my test because of the fee. I had to get money from family and friends. It was difficult to get money from Afghanistan. With help from the Afghan Embassy and an NGO this was eventually resolved.
“One of the women’s organisations which has an office in the US called Women for Afghan Women helped me to get money through their account. Everyone sent me a financial contribution toward my treatments – family, friends, members of civil society and government.
“Chemotherapy was the worst. Each stage was very painful but when I was passing through difficult times I thought of cancer patients in Afghanistan, especially those who had no money to pay for treatment and just had to wait to die. When I thought about them, I really understood how lucky I was.”
So what, realistically, can happen? And how quickly?
Soon after the London-based Afghan Women’s Support Forum started its social media activity about breast cancer the CEO of Alem Health, Mr Aschkan Abdul-Malek, got in touch. He wrote, “Our company provides high quality diagnoses for mammograms in Afghanistan through a network of over 400 US, EU, and India-based radiologists. There are plenty of facilities that perform mammograms in Kabul, but awareness on the part of patients is limited, and healthcare spending on screening and preventative care is quite low in general. The breast cancer cases we do see are all Stage 3 or Stage 4, whereas we’d like to diagnose things much earlier.”
He claimed that the problem was compounded by poor standards of service delivered by local radiologists and technicians. “When we first go into a facility, the images being taken by the technicians are often of unacceptable quality for diagnostic use, but we know somewhere a radiologist or someone else has been reading them, so we work with the technicians to get their skills to a global standard so our radiologists can confidently diagnose.
“A mammogram costs about $30 US for a facility to take. We charge a little less, in addition to having an Indian, European, or American doctor read it, usually within three hours. We don’t charge for any of the IT infrastructure, we’re fully private sector and work with private sector hospitals, so unlike aid projects, our entire budget for a year is a fraction of the cost of a Land Cruiser!”
But is an internet-based service really of significant value? Afghanistan’s living standards are among the lowest in the world so paying for anything – diagnosis, treatment or aftercare – will put help beyond the reach of most women.
The good news is that in October 2014, something unprecedented happened; the country’s new First Lady, Mrs Rula Ghani, accepted Shinkai’s invitation to support the breast cancer campaign she had initiated.
In terms of credibility, that public commitment by the president’s wife was a game changer. Now, through the continuous efforts of Shinkai Karokhail and the First Lady’s Advisor on Health Affairs, Fawzia Alam, a variety of key players have started working together on cancer control. What was initially a loose alliance soon developed into the Afghanistan Cancer Control Coalition (ACCC).
Its co-ordinator, Dr Maihan Abdullah, said from Kabul, “The ACCC is an extraordinary alliance of organisations and individuals committed to working for cancer prevention and control. The political commitment alongside ACCC has given its members new hope in the fight against cancer. In a meeting with H.E. First Lady and the Health Minister, ACCC convinced the Minister to form a Technical Committee consisting of members from ACCC and the Ministry.
“It decided that a Cancer Centre was urgently needed and that efforts should be started as soon as possible for its establishment. ACCC members – a variety of public health specialist, midwives and surgeons – vowed to provide their expertise voluntarily in the proposed facility and, in subsequent meetings, Dr. Zarghuna will participate from the UK, through Skype, to offer her recommendations.”
THE AFGHAN WOMEN’S SUPPORT FORUM
The Afghan Women’s Support Forum, a UK-based networking group is trying to focus attention on the issue. Its eclectic membership, a loose alliance of individuals with an interest in Afghanistan and its women, was brought together by Baroness Fiona Hodgson.
Fiona, whose first visit to the country was nearly her last, escaped death by hiding in a wardrobe during the siege of the Intercontinental Hotel in 2011. But she has been back since and, like all members of AWSF, is conscious of how big a divide there is between what western women can expect when serious illness strikes and what happens in Afghanistan.
She said, “The group relies on its membership to provide intelligence about what issues are of most importance to Afghan women. We don’t want them to be forgotten. When Zarghuna told us about the lack of provision for identifying and treating breast cancer, and the human tragedies associated with that, it became a priority for us. I have several friends in the UK who have had breast cancer and it was further personalised for me because I know Shinkai, so this dreadful disease had a ‘human face’.”