In March, SIBF commissioned two short questionnaires asking infected and affected people of their views on the £30,000 lump sums issued under the Scottish Infected Blood Support Scheme (SIBSS) and their experience of past and current treatments and whether any had achieved a Sustained Viral Response (SVR).
Thank you to those who responded. Your views confirm our anecdotal views from informal discussions with other members. The responses are summarised below:
When received:
All but one respondent received the £30,000 lump sum in December 2016; that person received it in January 2017
Respondents received the initial Skipton £20,000 from 2004 to 2007.
One responded she had received the initial lumps sum for herself (at stage 2) and her husband who passed away (also at stage 2).
Any amount left of the lump sum?
All but one respondent had fully spent the £30,000 lump sum. One person had retained around £4,000 in savings from it.
How used?
All respondents paid off some of their own or their family’s debt accumulated over years of limited income.
Around half paid for much needed home improvements, assisted family members and children or paid for a car. Some had to purchase a car as their motability vehicles were taken off them from the re-appraisal of benefits. One respondent lamented ‘what they give you with one hand, is taken away by the other’.
Around a quarter of respondents used the lump sum to also pay off their mortgage or personal loans from family members to pay for their house. A quarter of respondents also used part of the money to take a much needed holiday.
When taken:
Respondents had their treatments in dates ranging from 1997 to 2012.
Knowledge of side-effects?
All knew of the stories of side-effects of those treatments but decided to proceed nonetheless; based on the information they were given access to, they viewed the risk worth taking.
Others, with severe haemophilia, knew that the treatment would entail many more self-administered injections. Some took the view 12 months was a small period of time compared to a lifetime of liver degradation from Hep C.
Stated side-effects included serious skin conditions, insomnia, loss of appetite, major weight loss, loss of sex drive, hypothyroidism (underactive thyroid) and clinical depression.
Duration of course of treatment
Respondents’ treatment courses ranged from 12 weeks to 52 weeks. One respondent stopped their treatment as the side-effects were too punishing for them. That person has been left with lasting thyroid damage. One respondent attempted 2 courses of treatment but had to stop their treatment: in 1997 after 6 weeks and after 6 months in 2012.
Future treatment?
Another respondent stated they were reluctant to attempt the latest treatments available due to their previous unsuccessful and painful experiences. Another stated that they would not undertake further treatment until study periods were sufficiently long enough to validate the stated success rates and to confirm the low side-effect rates and to confirm that the side-effects were not lasting or permanent.
Sustained Viral Response achieved (SVR)?
Approximately half of respondents stated they had achieved an SVR, half reported they had not. This is well below the ‘stated’ success rates and we acknowledge that it is possible that non-SVR people may have been more inclined to complete the questionnaires, thus biasing the responses. However, the reduction in SVR appears to still be a notable deviation from the established published figures.
Comments included:
“my life was destroyed for 6 months”
“I feel just as bad as when I had HCV”
“my liver doctor said I had an SVR but said it wasn’t a 100% cure”
“my virus might come back”
“my hepatologists says it exists in the eyes and brain after treatment”
“6 months after finishing the treatment I developed bad headaches and now need glasses”
“I developed lots of chest infections and was diagnosed with asthma which my consultants said would have been caused by the treatment”
“the skin around my feet and toes flares up from time to time”
“I suffer from kidney stones after the treatment’
“I feel terrible and am in severe pain, but there is nothing they can do, except prescribe pain killers”
“I know lots of people who have completed the Interferon and Ribavirin treatment and were told we have a Sustained Viral response or Cured”
“Some, on the internet, have said that they experienced SVR, some not. All who have undergone Interferon/ Ribavirin, say that their after-effects are terrible. I agree wholeheartedly.”
“I don’t know anyone who has had a positive response from the treatment and I`m a member of both Haemophilia Scotland and Scottish Infected Blood Forum”
“I know other members were offered Psychiatric help before starting treatment but I wasn`t. I was too embarrassed and too proud to ask for psychiatric help, I would rather just deal with it myself”
Once again a huge thanks to everyone who took part.
