“Do not let me die”

At the beginning of last year (2014) I committed Blenheim to campaign on behalf of people with drug and alcohol problems, more specifically for the organisation to campaign around the issues of declining investment in services and the failure to treat those with hepatitis C. By the middle of 2014 I had added the failure to provide access to the life saving drug Naloxone and the need to review drugs legislation to bring it into the 21st century. Interestingly a view shared by a majority of ex Government Ministers responsible for drugs and a significant proportion of ex Chief Constables. Well done Nick Barton the Chief Constable in Durham and Norman Baker MP for daring to say so whilst still in office.

At a time of public sector cuts and funding for drugs and alcohol services delegated to Local Authorities along with a lack of clarity about what they are legally required to provide, there has never been a more urgent need to have clear English government lead spelling out the responsibilities of Local Authorities along with the levers to ensure they deliver. What we have is Localism, a post code lottery and a Government acting like Pontius Pilate. Over the next 3 years spending on drug and alcohol services is predicted, on average, to fall between 25% and 50%.

I and other dedicated determined people have meet with Ministers, MP’s, officials, signed letters of outrage, letters consensus, got questions asked in the House of Lords and the House of Commons and received promises of change and assurances of a Government commitment to action. Thank you to those committed MP’s, Lord’s and Baroness’s who have supported our cause.

Such promises vanish quickly into interdepartmental committees, policy forums and committee sign off, and if all else fails denial of responsibility or power and the words “the funding and responsibility has been devolved we no longer have control and few levers”.

Over the last year there has been a lot of talk, lots of meetings, and little action or change on the ground. There has been little improvement in access to hepatitis C treatment. We still fail to treat 97% of people with this life threatening illness. Imagine the outrage if this was breast cancer or lung cancer, particularly if the death rate was climbing year on year as it is with hepatitis C.  Now imagine if you could completely cure everyone with breast cancer or lung cancer but decided to only cure 3% a year. Outrage! This is precisely what happens to those with hepatitis C.  There is a real risk now that even this appallingly low figure will become unachievable as a result of changes in funding.

Lets move on to Naloxone, I am going to plagiarise an article by Chris Ford and Sebastian Saville, otherwise known as creative swiping (sorry).

What do we do with a medicine that prevents certain death for people with a particular condition—and is safe, cheap, and easy to administer?

  1. Immediately make it accessible to those who can administer it when such a life-or-death situation arises.
  2. Make it available to no one except doctors and emergency room workers.
  3. Endlessly debate the particulars of how and when it should be widely introduced.

If you picked number one that would seem to be a reasonable choice. Unfortunately, it would also be incorrect. With few exceptions, answers two or three apply in the vast majority of the world when it comes to the medicine naloxone.

I was outraged when I heard of a 3 year delay in responding to the ACMD recommendations to make Naloxone more available to families, peers and friends. Blenheim hosted a summit and a wide coalition of agencies and service users formed the Naloxone Action Group (NAG) England. We quickly found a wider scandal of widespread failure across England to supply Naloxone to anyone in over of 50% of Local Authorities.  This is shameful and NAG England will seek to hold authorities accountable.

Overdose remains a leading cause of death among people who use drugs, particularly those who inject. Increasing the availability and accessibility of Naloxone would reduce these deaths overnight.

We await important guidance from PHE on Naloxone, due this month, which local authorities are unfortunately free to ignore unless we give those who are failing to implement a reason to change and somehow hold them to account.

Now this could get depressing and I could go all Shakespeare on you and the following Macbeth quote springs to mind.

“To-morrow, and to-morrow, and to-morrow,

Creeps in this petty pace from day to day

To the last syllable of recorded time,

And all our yesterdays have lighted fools

The way to dusty death.

Out, out, brief candle!

Life’s but a walking shadow, a poor player

That struts and frets his hour upon the stage

And then is heard no more: it is a tale

Told by an idiot, full of sound and fury,

Signifying nothing.”

But last week something amazing happened in Portugal!

“Do not let me die, I want to live” shouted Jose Carlos Saldanha a patient awaiting treatment for hepatitis C, to the Minister of Health during a hearing taking place at a Parliamentary Committee on Health before being escorted from the room.

José Carlos Saldanha was attending several hours of debate on access to treatment for hepatitis C.  He was accompanied by the children of two other patients with hepatitis C one of whom had recently died. Speaking to journalists outside José Carlos Saldanha said that “only in this country, do you see this little shame and that the minister is a “killer” (unfortunately Jose is wrong the same is true in England).

Interviewed on TV the following day José Carlos Saldanha revealed that his treatment had been agreed a year ago and spoke of a “war” that has waged as he struggled to gain access to treatment.

“I am not an imaginary patient, I’m real. The war has been great and my air time is very short. […] There is a cure and I do not understand what they are waiting for.”

This issue has now been a leading political story in Portugal for the last week with the politian’s under fire not only for the failure to supply treatment but for the way in which they initially treated Mr Saldanha and the two people with him.

A week later and Mr Saldanha has started hepatitis C treatment and Portugal is well on the way to putting in place a national programme of treatment for those with hepatitis C.

The extortionate prices of new hepatitis C treatments are also under attack as Medecins du Monde an NGO are challenging the patent on Sofosbuvir with the possibility of dramatic reductions in cost.

Later this month is the DDN Service User Conference, perhaps the time for talking is over, perhaps the time for war is here, and perhaps the time to demand the right to treatment is now. The time to demand “Do not let me die” has arrived.

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