Activist and breast cancer victim Emma Robertson surfaced from the UK headquarters of the pharmaceutical giant Pfizer last month bearing a bright blue T-shirt. Embellished on the back in bright yellow letters were the words: “No drug should ever cost a life”.
Thirty minutes beforehand she had seized a pen. Saying that she couldn’t believe that she had almost neglected to endorse her own petition, hurriedly adding her signature to close on 20,000 others demanding that Pfizer cut the cost of a breakthrough breast cancer medicine which about 5,500 NHS patients had been refused.
In February, the medication Palbociclib had been refused by the National Institute for Health and Care Excellence (Nice) for use on the NHS in England owing to its massive price tag, estimated at about £140 a pill.
Two days after Emma Robertson, 36, handed in the petition, Nice declared that Palbociclib would be recommended for routine use on the NHS across England after Pfizer agreed to reduce the cost, although to what, precisely, will remain secret.
The triumph was the height of Emma Robertson’s primary battle with a new activist group, Just Treatment. Established just under a year ago, the group has recruited nine patient leaders who have all fought to get the treatment they urgently required on the NHS.
They get training and assistance to initiate campaigns with money from contributor George Soros’s Open Society Foundations. Forty core members are supported by more than 20,000 sponsors who write to politicians and businesses, endorse petitions and protest.
Too many activist groups simply apply pressure on Nice and the NHS to cough up the cash for pricey treatments. Alternatively, she wants the pressure put on the drug companies producing the huge costs and as a patient, Emma Robertson clearly wants and needs the NHS to fund Palbociclib, but as a citizen, she knows there isn’t some magical money tree.
We exist in a nation with poor resources, which means not everybody can get everything they require. Patients rightly demand access, but rather than putting more stress on where resources are allotted, we should be looking at root causes, like why the medications are so expensive in the first place.
Emma Robertson maintains that if the cost was lowered to a pound a tablet, Palbociclib would be more in range with what it may actually cost to manufacture and would still allow for a profit.
Just Treatment wants to have complete clearness of the drug industry to expose how much public and private expenditure is made in the construction of a medicine, how much drug businesses waste on marketing and selling, the complete revelation of all experimental proof, and complete openness on the costs being imposed.
The victory of Emma’s petition reveals exactly how outraged and involved the public is when it comes to the NHS and access to medications, and how prepared they are to support causes like this.
Just Treatment’s co-founder and principal organiser, Diarmaid McDonald. For numerous years, he fought for more fair access to antiretroviral medicines to fight HIV and he’s seen that fight and the unbelievable successes in developing nations for people securing important access to medications.
Frequently, back in the United Kingdom, he started seeing many of the same problems of not being able to obtain medications because of huge price tags and a fight needed to be had at home as well as overseas and it’s important that the pressure is utilised in the right place, on the companies who set the costs and many of Just Treatment’s patient leaders have records as activists in their own right.
Mel Kennedy, 40, fought for the life-extending cancer medication Kadcyla to be provided on the NHS in Northern Ireland. Mel Kennedy had to crowdfund, raising £26,000 to use on treatment privately until in June Nice turned they’re its decision and allowed the medication for use in Northern Ireland.
After Simon Brasch, 51, got his shock diagnosis of hepatitis C two years ago, something he associates to an earlier blood transfusion, he had to wait over a year to get the medication he required. Even though the medications were approved for treatment on the NHS, their cost meant they were stringently rationed.
Simon Brasch, who lives in London, didn’t make the cut and his doctors were in a permanent position of not knowing. It was simply a matter of waiting until his liver was bad enough to put him over that threshold for treatment.
Simon Brasch feels strongly that in situations like this the United Kingdom, the government should just overturn the monopoly on the medication. Patents give their owners a brief monopoly on producing the medication, effectively enabling them to establish costs as they see fit.
Overturning these would enable other companies to make affordable generic copies that the NHS could afford without having to ration access.
He points to India and Italy, whose governments have taken on big pharma and won, justifying such measures as needed to protect the well-being of their populations and if companies can’t offer reasonable prices then we need to take action to enforce them to do so.
Under the crown use provisions of the 1977 Patents Act, the government can lawfully override a patent and implement a compulsory licence so long as it gives sufficient compensation to the holder.
However, there’s a dilemma, this could cost billions of pounds. But such actions are unlikely to get traction in the United Kingdom. The political costs are high and would mean going against incredibly powerful forces.
It’s quite like tobacco or alcohol, or guns in the United States. You’re going up against one of the most lucrative enterprises in the world.
Clare Groves, 49, had to wait nearly three years for hepatitis C treatment in London and it’s frustrating at how hard things can be, even if you’re well informed and there was so much to and fro between specialists.
Nice said the medicine that she required should be given to everyone, but then there were stringent quotas in place and it’s this point that Just Treatment really want to hit home and the blame rests with drug companies charging unjustifiably costly prices.
We must ensure the burden is on the drug companies who introduced the costs as well as the system that permits them to do so. However, the pharmaceutical industry claims that it costs as much as $2.6 billion to produce and market a new drug and without huge prices, companies would be incapable or opposed, to keep the pipeline of new drugs circulating.
But since 2016, the UK Competition and Markets Authority have penalised a number of drugs companies for improper pricing of medicines.
Just Treatment maintains the industry’s own numbers don’t stand up to scrutiny and it points out that the centre for the study of drugs development at Tufts University in the United States, which provided the $2.6 billion amount, declares 25 percent of its running costs come from the drugs trade and associated businesses.
Plus a recent analysis of 10 new cancer drugs published in the Journal of the American Medical Association (JAMA). Internal Medicine put the median cost of producing a single cancer drug at the much lower $648 million. (The median revenue following approval for such a drug was $1.66 billion).
The prices the NHS pays for specific drugs are usually kept secret, and it’s hard to find out how much is used in research and development. However, the entire NHS drugs bill was £17.4 billion in the year to April 2017 up 34 percent following 2010.
In the United States, a 2015 inquiry discovered that nine out of 10 large pharmaceutical companies used more on marketing than on research. The industry further relies massively on publicly financed research.
A recent study by Global Justice Now and Stop Aids found the NHS had spent £1 billion on medications last year alone developed by drug companies but with abundant help from the public pocket. Although Just Treatment was happy about the victory of its initial campaign.
However, pressing questions must be asked about how much we’re spending out for drugs and it certainly does seem to be over the odds.
After Pfizer reduced the price of Palbociclib, there are still hurdles in bringing new cancer medications to patients in the United Kingdom and as cancer medicines are becoming more advanced and complex, we must continue working in conjunction with Nice, the NHS England, the government to guarantee the system is able to keep pace with medical discovery, so that patients can obtain medications they require.
This is necessary if the United Kingdom is to fulfil its goal of world-class cancer outcomes.
So what are the struggles ahead? Just Treatment will continue to strive for affordable cancer medicines, as well as directing its attention to others with eye-watering high prices, including medicines for hepatitis C, Addison’s disease, and Cystic Fibrosis.
It’s not going to be easy, but there’s absolutely no reason to not be looking for other ways to do things and how they finance and fund for drugs presently is not working for anybody. Until they do, people will keep paying with their lives.