By Michelle Crawley
A MULLINGAR man desperate to save his wife’s life says he will travel to Egypt and purchase a revolutionary new drug if the Minister of Health does not facilitate a rapid access programme to the life-saving treatment.
Mullingar resident, Des Kennedy, is at his wits end appealing to the HSE to fund a new direct action anti-viral therapy, Sofosbuvir (trading as Sovaldi) for the liver disease hepatitis C which could potentially save the life of his 70 year-old wife, who has been given just 6 to 12 months to live.
Speaking to Topic this week, Des explained that his wife contracted hepatitis C in 1987 when undergoing a hysterectomy at the Midlands Regional Hospital in Mullingar. He further explained that his wife’s condition has rapidly deteriorated in the past year. “She has cirrhosis of the liver as a result of contracting Hepatisis C and it is now causing chronic liver failure.”
RESPONSIBILITY
Although it is understood that Mrs. Kennedy had been given some compensation as a result of contracting the hepatitis C virus during a blood transfusion, as well as access to a wide range of medication, the HSE currently hasn’t given the green light in backing the treatment which could save her life. “My wife has tried every kind of treatment and medicine available to her but it will not save her life, but this new once-a-day drug could. It is their responsibility. It is their fault that she contracted the virus in the first place. It is their responsibility to get her the treatment she needs,” he voiced emotionally.
The drug, developed by biopharmaceutical giant, Gilead Sciences, costs in the region of €45,000 for a 12 week course per patient and has recently been approved by regulators in the U.K and given the green-light by the National Health Service.
It is understood that health technology assessments to prove the cost effectiveness of the drug are currently being carried out by the National Centre for Pharmacoeconomics in Dublin.
“If the HSE don’t back this treatment, my wife will die. It is as simple as that,” voiced the distraught husband.
PUTTING A VALUE ON LIFE
“It angers me that this Government gives €690 million per year in foreign aid and they are weighing up whether it is cost-effective to pay €45,000 for life-saving treatment for its own people,” Des stated with frustration. “They are carrying out cost-effective analysis and meanwhile people are dying. My wife is at the top of the list of hepatitis C sufferers waiting to get this treatment” he sighed with a heavy heart.
He also pointed out that the treatment would actually prove cost-effective for the HSE as it would prevent patients from needing to undergo an expensive liver transplant, thus saving the state lots of money in the long run.
APPEALING TO THE MINISTER
This Mullingar couple has received a lot of information from Transfusion Positive, a support and action group for people infected with hepatitis C, and is hoping that the group can put pressure on Health Minister, Leo Varadkar, to speed up access to the drug, and to highlight the necessity for the drug. Topic spoke to Maura Long Murphy, a spokesperson for Transfusion Positive, who confirmed that the group are hoping to secure a meeting with the Minister once the Dáil reconvenes after the summer and make them aware of the necessity for fast action on this treatment.
Desperate to raise awareness of the issue before the Dáil returns in September, this pro-active and determined husband has made contact with local TDs about the situation and even wrote a heart-to-heart letter to the former Health Minister, James Reilly, but was disappointed to receive a short letter back noting that it has been brought to the Minister’s attention. The lack of clarity as to whether the drug will be available for HSE patients such as his wife in the future is ever more frustrating as days turn into weeks and months.
DESPERATE MEASURES
“I am fully prepared to go to Egypt where Sofosbuvir is available on prescription at a fraction of the cost it is in Europe and the U.S. I am more than willing to fly out there and purchase it but I don’t think it would be allowed. I might be stopped at customs,” he said defiantly, before adding with sheer determination “but if that is what it takes to save my wife’s life…”
