Having access to a sight-saving drug such as Lucentis (used for treating wet macular degeneration) should be a basic right. However, many people suffering from macular degeneration find that treatments such as Lucentis and Avastin are not covered under public health care systems or are caught up in prolonged beaucratic approval processes.
Three UK Pensioners are headed to court to challenge a decision by Warwickshire health bosses not to fund the drug Lucentis to treat their macular degeneration.
Three UK patients headed to court challenging their NHS trust to pay for the treatement of Lucentis, a sight-saving drug for wet macular degeneration. The court case came after Warwickshire health bosses made “difficult decisions” not to fund Lucentis, basing their decision on the cost of the drug. With macular degeneration being the leading cause of blindness in the UK, and the cost of treatment with Lucentis being estimated at approximately 21,000 pounds per patient over a two-year course of treatment, the NHS trust justified denying the patients coverage for the sight-saving drugh.
The National Institute of Clinical Excellence (NICE) in England had issued a draft guidance in April 2008 indicating that Lucentis should be used by the NHS. However, many primary care trusts (PCTs) were not following this advice and there was no legal requirement for them to follow the draft guidance recommended by NICE.
Yet, throughout different parts of the UK, Lucentis was covered for macular degeneration. In fact, the drug had been available in Scotland for more than a year. In Wales and Northern Ireland extra funding was promised to pay for all suitable patients to receive the drug.
RNIB spokesman Steve Winyard had described the situation as a “national scandal” stating “By making it impossible for anyone to qualify for funding, the PCT is heartlessly letting patients in its care go blind, rather than pay for the treatment that could save their sight.”
The three patients were concerned that there was little time remaining to save their sight. Wet age-related macular progresses rapidly as abnormal blood vessel growth and leakage damages the retina, destroying central vision in those suffering from the disease. Delays in treating the eye disease could mean damage to the patients eyes would be irreversible.
Lucentis treatments have been clinically shown to not only stop the progression of macular degeneration, but in some cases reverse the damage caused.
The trio (Jean Middleton – 78, Raymond Liggins – 76, and Patricia Meadows – 65) headed to court, challenging the decision by Warwickshire PCT to not fund the cost of Lucentis.
In late July, the three UK pensioners won their high court battle to receive Lucentis, paving the way for others who suffer from macular degeneration to receive the drug as well. The victory came after Novartis agreed to start a “cost sharing” deal earlier than expected. The cost-sharing deal was initially planned to start when the final NICE guidance on Lucentis was released. The high court case will likely be settled without the need for a ruling now that the cost-sharing agreement has been put in place and extended to all other PCTs in England.
Warwickshire PCT has stated that it has not changed its policy on Lucentis, indicating that the drug could not be funded without the Novartis cost-sharing deal. A spokesman for the PCT said “The draft guidance states if the NHS meets the treatment and cost of 14 doses of the drug for any one individual, the cos tof any further doses for that individual would be met by the manufacturer.”
The July 2008 decision was a defnitive victory for all people throughout the UK who suffer from the disease, giving them access to the sight-saving drug Lucentis for their macular degeneration.