Sue's story

Six years ago I was diagnosed with Secondary Addison’s disease, otherwise known as adrenal insufficiency. This is a hormonal disorder that happens when the adrenal glands do not produce enough of the hormone cortisol. I was prescribed Hydrocortisone, the only drug recommended to treat this condition. If I don’t take it every day I will die. 

One of the problems with Hydrocortisone is that it causes weight gain. This is hugely problematic for me because I am registered disabled - my left knee has just one ligament holding it together and my foot is paralysed, so I’ve been advised I must not put on weight. Because of this, my endocrinologist wanted me to change to another drug called Plenadren.This is a slow release form of Hydrocortisone, which is then topped up with additional Hydrocortisone when I need it (i.e. when I am running a temperature and need to double dose). 

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Plenadren, however, is much more expensive than the alternatives - £242 for 28 days of treatment. Another drug called Prednisone costs only 89p for 28 days of treatment and some hospital trusts push for the use of Prednisone because it is so cheap. My endocrinologist fought for me to to be allowed Plenadren under the Named Patient scheme.

I represented the Addison’s Disease Self Help Group in discussions with the Scottish Medicines Consortium, along with the Pituitary Foundation, whose members also need Hydrocortisone, requesting the approval of Plenadren for Addisons in certain cases. I  was unsuccessful. There was a suggestion by one representative that Prednisone could be a cheap alternative to Hydrocortisone. Luckily the panel took on board that Prednisone acts in a different way and is therefore not a viable alternative. At least we won that battle!

At the end of the day, Hydrocortisone is the only drug that is effective and life saving, whether in standard or slow-release form. This drug has been on the market unchanged for many years, but the company that had been given sole manufacturing rights in the UK recently hiked up the price massively. It is possible to buy it in Europe for a fraction of this price.

As well as this, three years ago I was diagnosed with Stage 3 Triple Negative Breast Cancer. I was treated with TAC chemotherapy and radiation. I was very poorly after the treatment and two years later, after endless scans and tests I was diagnosed with acute myeloid leukaemia caused by the chemotherapy for breast cancer. This is incurable; the chemotherapy I receive is just going to buy me extra time - how much, nobody knows but probably measured in months rather than years. 

I have spent my life lobbying for the rights of children in the Early Years sector. In the last few years I've been a researcher and writer. Last year I led a campaign to improve safety in the Thames and I’ve recently written a cookery book, with lots of recipes from celebrities, to raise money for the Addison’s Disease Self Help Group. I like to feel I can still be of use to society on the days I feel well enough.

I’m involved with Just Treatment because I believe strongly that every decision on drug approval should be determined on a case by case basis. I find the greed of the pharmaceutical industry beyond immoral: my personal belief is that making massive profits on the back of seriously ill people is beyond disgusting. Even more so is a government that allows it. The very time people need help and appropriate medication is at the very same time they feel the most ill and vulnerable. 

I am a researcher and confident communicator. I have, so far, managed to get the best drugs available. There may come a time when I hit a brick wall. I often wonder what happens to those who do not know how to demand their rights or believe everything they are told. We need to fight for them.

Elizabeth Baines