Change Maker

I know about throat cancer only too well. I was diagnosed on the 1st of July 2010. That was the day my world was turned upside down. I had a cancer on my right tonsil, most likely caused by a virus I had never heard of: HPV.

During the following nine weeks, I received either chemotherapy or radiotherapy. The recovery from those treatments was slow and painful. It took me a couple of years, and during that time I learned much about throat cancer, the human papillomavirus, and the simple way to prevent it.

The HPV vaccine is safe and effective. It was given to girls in the UK to protect them from cervical cancer. But boys were denied access to the vaccine – even though it also protects against other cancers, including anal, penile and throat cancers. Boys could only wait and hope they never got one of those. The government argued that if girls are vaccinated, then boys having sex with them are protected as well. This is absolutely ludicrous. First of all, not every girl chooses to get the vaccine, and second, what happens to men who have sex with men? We know there's a significant bisexual and homosexual population.

I started the Throat Cancer Foundation in 2012 to raise awareness about the disease. But I realized that getting the government to expand its vaccination policy to include boys would require a broad coalition of committed organisations and patient groups.

So we launched HPV Action, which eventually represented more than 50 different associations campaigning for a vaccination programme to protect everyone. Success, we discovered, would require sheer bloody-mindedness, tenacity, and the will not to give up, because we were confronted by one obstacle after another.

We felt a profound sense of urgency. We could not afford to wait when lives were at stake. So, we campaigned hard – with government ministers, with members of the House of Lords, with all political parties. We encouraged the public to lobby their MPs directly. Changing government policy requires going to the decision-makers. You have to reach people who are influential, people responsible for public health policy. You have to reach senior physicians and their associations and organisations. You have to start a public petition. You do whatever you can to raise awareness and win support.

We even had a national newspaper campaign highlighting some of the men who were dying because of the government’s restrictive, discriminatory vaccination policy.

We developed a strong financial argument. The government insisted that it was too costly to vaccinate boys. But we found a health economist whose modelling completely undermined the government’s case. We showed how the government was refusing to count the enormous financial burden these cancers were placing on the state: the cost of post-care treatments, doctor visits, nursing support, speech and language therapy, welfare benefits, and more. The government didn't count any of that. It was ridiculous. We documented all of it. Not only the medical costs but the economic costs of young men, typically in their forties, unable to work and contribute to society for months or even years.

We presented a full and clear picture why it was better to vaccinate boys as well as girls and prevent these cancers from ever developing.

We also developed a powerful case based on equity and ethics. We argued that it was unfair to deny half the population access to a potentially lifesaving injection, and that it was unlawful sex discrimination. We got a legal opinion from a prominent barrister specializing in human rights warning that the government could have a case to answer. This enabled our solicitors to write to the Department of Health and to the government’s vaccination advisory committee threatening legal action.

Finally, the government ministers had had enough. They thought, you know, we're not going to win this. We can't win. So let's just let's just give in. This was an amazing victory for us, and for the country. The government had been saying ‘no’ to us for five years, and very firmly. Now they were changing course and they were widely applauded for being one of the first European countries to do so.

I would like to think we helped the government do what was right. The gender-neutral HPV vaccination policy will save money in the long term, and it will save lives. After all, the first responsibility of any government is to look after its people.

To find out more about our HPV Action Network, its history, its co-chairs Prof. Daniel Kelly OBE and Margaret Stanley, Immediate Past-President, International Papillomarvirus Society (IPVS), click here. We also thank our past co-chair Rui Medeiros, President, European Cancer Leagues (ECL).

Also, don't hesitate to check out our HPV Testimonies project here.