The Common Sense movement in Oncology

Dr Verna Vanderpuye - National Center for Radiotherapy and Nuclear Medicine, Accra, Ghana

Could you tell us about Common Sense in Oncology?

Common Sense in Oncology is a new movement. We realised that there is a plethora of new drugs, new innovative drugs, which in actual fact actually increases the cost of cancer care and also the cost to the health system, not because of the cost of the drug but the cost of the side effects and the outcomes might not be that beneficial to the patients based on the economic resource, or what we call cost effectiveness.

So we are a group coming together to say, hey, this might not be that necessary. How are you conducting these studies? Are you conducting these studies in the right people? What are the right endpoints that you are choosing to say that this is efficient or not? Sometimes the differences are just like a month or two weeks or three weeks and they call it standard of care. So the issue now is that I know some countries will say, ‘Well we have money, so it’s not an issue.’ But look at the broader picture and the waste – that money could go into support so many other social amenities in our communities or increase the knowledge about cancer, in terms of increasing prevention.

So there’s a lot of waste. Not only that, but our young trainees… We have more and more oncology young trainees and they are learning these habits, just prescribing. In high-income countries it might not be a problem, it still is because it’s still the number one cost of bankruptcy. But in Africa when patients have to have a high out-of-pocket payment, it really is a big problem because it trickles down into families, into social amenities for their children, for their families, even for their jobs because most people are informal workers. So they need this time off and whether they are suffering from side effects which wouldn’t really change their trajectory. There are other simple drugs that everybody seems to have ignored.

Now we have a shortage of basic chemotherapy in places like Europe and America, just because everybody wants to put more money into the high-rating drugs, the so-called high-rating drugs and leaving out the basics and they are now suffering. Just to come back, sit down at the table and look at what really is important. Everybody could arrive in a Mercedes Benz, everybody who arrives in a Toyota, everybody who arrives in a Fiat, you understand – how you arrive, yes? But what is really more realistic to you is what we want to sit down and help to train our people to critically appraise these studies, critically appraise all these randomised studies that are coming out. What really makes sense, what doesn’t make sense and be able to question it and apply it to your patients. You are generally trying to drive change in the way we manage our patients to make it more realistic.

Why is access to essential drugs important?

I was in the Medicine Planned Pool session; there were a lot of patient advocates. It’s good to listen to patients – they give you a different bird’s eye view of the situation. So you are just prescribing, you are just writing, thinking that you’re really doing something when in actual fact we don’t sit down and communicate with the patients. So that’s a big gap and when you listen to them you realise, ‘Oh my goodness, did I really do this?’ Did we really do this?

But it was a session where we all discussed why do some parts of the country have access to essential drugs, cancer drugs, and other parts of the world don’t have. Not only that, but also the toxicities that come along with these drugs. We always say that universal healthcare, it covers just the cost of the drug. Out-of-pocket payment actually might be so much more than the cost of the drug and this is what we fail to see. So the thing that we know we should cover is not just the drug but everything that comes along with the drug. So these are things that we have to look at. And for countries that don’t have universal health coverage, a drug like Herceptin almost doubled progression free survival or the outcomes of patients. I’d call it a sin if a patient who is HER2 positive does not get Herceptin, even if it’s for six months at least, because we know it makes a big difference in the outcome. But some countries you have to pay out of pocket and most of these countries, their incomes are so low even for high-end professionals let alone informal workers or middle-income people. So then there are a lot of disparities there and I think that’s the whole idea of this coalition coming together to try and improve access to essential drugs. Herceptin is just one of them, there are so many other ones.

What is your role in the Women, Power and Cancer: A Lancet Commission?

I’m one of the co-Chairs, there are three of us. I’m one of the co-Chairs with Ophira Ginsburg and Isabelle Soerjomataram, she’s from the WHO. So this a group, it was actually convened by Ophira and she knew she couldn’t do the work alone so she got other people to help her along the line. Then we have about 21 commissioners, so many advisors, mentees, to come together to search the literature and produce original research as to how women are doing in the cancer platform.

So not just in terms of patients, professionals, including advocates, informal caregivers - what is the role of women in the cancer trajectory? Basically that’s what it is so that’s what we looked at. A lot of interesting findings in that. Women make up a lot more of the cancer workforce than we think but most people don’t get accredited for the kind of work or even recognised for the kind of work they do. One is caregivers – most people don’t have pay, a salary, for caregiving. They have to leave their jobs, their children suffer because of that. Most women, actually, they are the sole income earners and they end up having the responsibility of caregiving, they can’t make any income for their families.

A lot more is going on also in terms of the nursing workforce. The majority are female and yet they are not included in cancer research, they are not included in any policies. Not even government level but even in the hospital level, even in the regional level, nothing. But they have a lot of experience to bear because they are the first point of contact with the patients. The same with the community health workers – most of them are females. Advocates – most of them are females, but these are all unrecognised and their input in, the economic growth of society, or even a country, or the impact on the patients. As somebody said, if a navigator navigates a patient their outlook to treatment is totally better. Their outlook to join in a clinical trial is totally different, compared to when a doctor says, ‘Take this drug.’ But if a patient comes and they say, ‘You take this drug because it will work for you because I did,’ or an advocate says, ‘It worked for my patient so I think you should,’ it will go a longer way, then we are happy. But all of these are ignored.

Also in terms of the professionals, women tend to be less… they are overlooked in terms of leadership positions. Almost the figure 16, I don’t know what it is, but less than 16% of women are in leadership positions. Even in the UN organisations, in the editorial boards, chief editors, principal investigators, it's amazing. There’s a lot of data to show that when it comes to research funding 70-80% of them go to men all over the world. So there’s something really not right. It’s getting better in some countries; it’s getting better over the years. I think it’s about almost 15% over ten years increment in this. But what we realise is that even when it comes to publications there are more female researchers, almost half to half, 45-50%, 60% of men, it’s getting much better. But what we see is that the juiciest positions for authorship still goes to the male. So depending on where you are the first authorship is the highest, it goes to the man. In some situations the last author is the highest and it goes to the males. So there are really a lot of discrepancies going on.

I think there was a study even about North Africa, and this is typical, where the deputy directors tend to be more women and the directors tend to be men. So there is a lot of… And then a lot of harassment along the line. It’s very difficult. That’s why the glass ceiling… it’s very difficult for you to break through the glass ceiling because you are ended – they think you can’t do it, you’re a woman, you have other social responsibilities that you need to take care of, the cultural responsibility. That also doesn’t help because sometimes we tend to make a lot of excuses because we have to take care of our children. It’s all social norms. But we are able to multitask. If you really sit down and look at it, we are able to multitask and still give what we are supposed to do.

Even in some places just because they have to take care of their children, the men won’t sacrifice to do that. Especially that happened in the COVID era where the woman had to bear most of the childcare responsibilities because they were at home during the COVID era. It caused a lot of leaky pipeline, people just stopped doing their work. And because sometimes the harm and harassment and the difficulties in balancing out their life, they tend to stop along the way and not earn as high, not achieve as high as they wanted to.

I had a story from one of the African countries that they don’t have female oncologists because their husbands tell them not to go and society thinks they’re not going to have any more children or it’s such a terrible field to be in. So you are not your own boss, basically. Somebody determines who you are and that is actually quite…

But I would say the patriarchy is also practised by a lot of females as well. In the culture that I come from we tend to say, ‘Oh, why are you doing this? It’s for males.’ I am guilty, I am changing but I’m guilty. They say, ‘Why are you doing this? Leave that for the males.’ But I think we shouldn’t really do that and I am hearing it more when I hear other people, my family members saying, ‘I don’t want my daughter to become this because she’s female, she has kids. Why does she want to do all that?’ I’m like, ‘What?’ But that’s after the commission, it's in my face that this is what is going on.

So I think it’s also about people seeing where women are, how much they can contribute to a society and even the impact of cancer. Even the way we do cancer prevention. I was just laughing this morning with a friend of mine, I’m like, ‘We have so much technology, nuclear bombs, IT, everybody is on their internet smartphones. But it took us so long to figure out self-sampling for cancer of the cervix screening.’ Can you imagine that? It took us so long to come up with that. So it just means that cancer is not the first thing that we think of and that’s what we want to do, put it in the forefront. So cancer control plans, preventive measures, they need to look at it from a gendered point of view. Because the stigma, there are so many things that are going on with women.

And women are different, we even found out that, indeed, the treatment of cancer, the side effects for some drugs like the immunotherapies are worse for women. But it’s not in any textbook, it’s not in our treatment guidelines that with a woman you need to watch out for this. Even in palliative care we found out that women tend to experience more pain. Nobody pays attention. You’re a woman, you need to be able to bear the pain. You need to be able to bear. Nobody talks about sexual function, it’s always about the men – ‘How is your erectile function?’ Everybody forgets, I do that myself unfortunately. Nobody is asking the woman, ‘So what is your sexual life like after your treatment?’ Nobody does that, we’re always interested in the men.

So we are not accusing or pointing fingers at anybody but we are actually highlighting the issues and make us more sensitive to what we do with women from an educational, training, facilities, the framework. We’re hoping that the framework will be rolled out so that everybody gets sensitised to gender-related issues. Not just males, females, but also other types of gender. We are in a new world unfortunately. So that is where we are. Thank you.