Thursday, November 6, 2008

Not so NICE - UK Law Could Potentially Deny Humira and Remicade

Ugh, see below, apparently the National Institute for Health and Clinical Excellence in the UK is trying to stop funding Humira and Remicade:

A woman with a chronic digestive disease fears she could be denied treatment under government plans to control spending on drugs.Ruth Holmes, 54, of Hartree Way, Kesgrave and her son both suffer from Crohn's disease, a condition that can cause symptoms including vomiting, diarrhoea, weight loss and extreme abdominal pain. But she fears she could be denied suitable treatment under proposals by the National Institute for Health and Clinical Excellence (NICE) to stop funding drugs used to treat acute Crohn's disease.

She said: “It is an absolute outrage. There are so many people going to suffer. I do not think the government does enough for people with Crohn's disease. “It is a life-threatening disease. They have got to think of the people who are suffering and the parents who have got to watch their children go through the symptoms.“It is awful to watch and you do not know what to do for the best, and sometimes you are at your wits' end.”

The drugs Remicade and Humira are commonly used for the treatment of severe Crohn's disease, but NICE has conducted a review of the expensive drugs' cost-effectiveness. At the moment, the decision to supply a patient with the drugs is taken by local NHS Primary Care Trusts on an individual basis.

NICE is due to decide whether to make the drugs available to patients all over the country, or to stop providing it altogether, except to those who already receive it.Kristen O'Leary from NICE said it will be a balanced decision so that all patients, no matter where they live in the country, will have the same rights to the drug. Mrs Holmes, who had a bad reaction to Remicade, is currently trialling a new drug, Certolizumab Pegol, at Addenbrooke's Hospital, Cambridge, but she says when she comes off it, Humira will be the only option available to her.She said her 20-year-old son, who does not want to be named, is currently being treated with steroids but will need to transfer to Humira or Remicade at some point.

Mrs Holmes fears if the new guidelines prevent health authorities from supplying the drug to new patients, she and her son will be left with nothing to prevent their pain.She said: “If they can stop the suffering with the drugs, why would they stop funding them? The next step would probably be to go abroad because I am sure they are not holding them back in America .A charity event to raise money in aid of Crohn's disease sufferers will take place at the Waterfront on Friday.

1 comment:

“Liberté, Égalité, Fraternité” said...

I caught the most recent episode of "Prime Minister's Questions" on C-SPAN this weekend. While this law itself never came up, one of the legislators addressed a recent change in the health care system under which cancer patients no longer pay for their cancer-treating medications. She asked if this policy might be extended to other patients with long-term medical conditions. The PM replied they are exploring doing just that.

I would advise our friends across the pond to review the episode (it aired sometime between 7-9 November) and to find out the name of the woman who posed the question. Contact her, as well as your district's elected officials and make an absolute fuss over this, and do it quickly.

Crohn's disease is poorly understood by the general public, and so it's easy for those who do not deal with it on a daily basis to think of it as "belly-aching" and the kind of thing that whiners make more about than is really there to get out of work. In the U.S., this idea has been severely impacted by a recent commercial for the Crohn's & Colitis Foundation of America featuring a star football player. As many Crohnies have reminded me over the last three years, we are our own advocates because we're the only ones who know and care about our condition.

Or, as the line from the last Bond song warned, "Arm yourself, because no one else here will save you." British Crohnies, you need to arm yourselves. Write your legislators, your physicians and the media. Make your stories known, and make it impossible for you and those like you to be ignored.

Crohn's Disease Blog