Wednesday, 31 May 2017

Patient Support Charities. Not all they seem?

Learning that we have contracted a serious illness can be a testing time, a time when we look for support and guidance. This is the basis of the growth of patient support and health charities: if there is a serious illness, there is now almost certainly a health charity that focuses on it. What could be better at such a difficult time?

  • People who have gone through similar experiences, to help them cope? 
  • What is the best treatment?
  • What treatments work? What treatments do not work?
Yet this simple equation is not as easy or as straightforward as it might appear. The Pharmaceutical companies understand their importance, and they have decided that they are a good way of investing money to promote their business interests.

I wrote about the issue in July 2013. There has now been further research into the scale of the problem.

               "Everyone's in the pay of Big Pharma, it seems, as new surveys reveal that doctors and patient advocacy group are getting payouts every year - and the only one in the dark is you, the patient".

This is the conclusion of a WDDTY article (May 2017), which refers to J Gen Intern Med, 2017; doi: 10.1007/s11606-017-4012-3, and N Engl J Med, 2017, 376: 880-5. Researchers at the University of Pennsylvania analyzed the finances of 104 patient support charities, and found that
  • 85% admitted to getting funding from drug companies
  • Of the remaining 15%, only 1 group did not receive funding from the health industry - the rest did not reveal their pharmaceutical connections!
The lead researcher, Genevieve Pham-Kanter, of Dexel university, came to this conclusion:

               "Drug companies have long known that even small gifts to physicians can be influential, and research validates the notion that they tend to induce feelings of reciprocity. But the more generous payouts are made to patient advocacy groups. Some receive up to $7.5 million in donations from Big Pharma, and a $1 million donation is not unusual".

WDDTY concluded, quite correctly, this such financial support creates a conflict of interest as many of these group advocate the use of specific drugs, or lobby regulators to get a new drug approved, whilst maintaining the fiction that it is "all for the benefit of the patient".

Of course, it is not for the benefit of patients, it is for the benefit of the drug companies, who do not spend their money unless and until they know it is a good investment! It raises an important question. How much can we trust patient support groups and health charities? The answer must be - not very much at all!

This is not new news. Nor is it news about which the mainstream media is unaware. For instance, BBC News, via the Victoria Derbyshire programme, looked into the activities of one such charity, the Hepatitis C Trust, in March 2017. It stated:

               "A charity that tried to force the NHS to buy more of an expensive hepatitis C treatment received large amounts of money from the drug's manufacturer. The Hepatitis C Trust has taken £200,000 in grant funding from US drugs giant Gilead since 2014. Last year, it unsuccessfully took NHS England to court for restricting access to the medicine on cost grounds."

Of course, the charity denied being influenced by the drugs industry, and said that it had always acted in the interests of patients.

The background to the story began in 2015 when NICE ruled it was cost-effective compared with older medicines, and NHS England set aside an extra £200m a year to pay for the drug, Sovaldi. This drug was manufactured by Gilead. It had a list price of £34,983 for a 12-week course! So the donation the drug company was making to the Hepatitis C Trust was well worth the money! 

And in addition, as far as the public was concerned, the court case had nothing to do with the pharmaceutical industry, who played no part in it. It was that 'mean' NHS, being challenged by a nice, well-intentioned charity, who only had the best interests of their patients at heart!

In such ways does the pharmaceutical industry work to generate its profits!

So what is this drug, Sovaldi. The BBC article, as usual, outlines how effective it is, straight from the drug manufacturer's publicity! It is "95% effective at curing the disease within eight weeks" we are told. If it was as effective as this the £35,000 seems a good deal! It is strange that Hepatitis C still exists, given such effectiveness! So perhaps NICE were aware of the side effects of the drug. They can be found here.

The public are being seriously misinformed about health, and the treatment of health. The conventional medical establishment is certainly not telling us the truth. The mainstream media is not telling us the whole truth. And it would appear that most patient support charities are speaking to us according to the donations they receive from the pharmaceutical industry.