27 September 2022: Panel on "natural clearers" still facing ill-health - A
This was the second of the Panels where victim-survivor core participants appeared in a thematic group to give oral evidence. This Panel had a focus on people who had been infected by Hepatitis C, had subsequently “cleared” the virus “naturally” without treatment, but who had still suffered with ill health.
The first witness bled a lot after a tooth extraction aged 11. He was recommended for testing into this and it was discovered he had von Willebrand’s Disease. Some time later there were nose bleeds and another tooth extraction. He received cryoprecipitate as cover. He soon thereafter became very ill with aches, pains, yellowing of his skin and more. The advice was to “drink plenty of Indian Tonic Water” since it was just “growing pains” and he would get over it. So of course, his farmer father who was “old-school” assumed he was just being a lazy kid. His teenage years were full of physical weakness, drastic restrictions to his previous athletic activities, brain fog to the extend of virtually having no short-term memory, and more. In school they thought he was simply stupid. Eventually, he was sent for more blood tests. The nurse was in full PPE which took him aback. They took 14 vials of blood, and when he asked why he was told he was being tested for HIV. When he again asked why, he was told it was because he had Hepatitis C. This was how he found out of his HCV status. He was then simply told to go home, and they would post out his HIV results. He asked about his life expectancy, and he was given short numbers of years for the various options, including death. There was apparently a 5% chance of him clearing it naturally. In the car home his dad was silent after being told. On getting back he told his mum who said if the HIV test was positive he would have to move out the family home rather than risk infecting his brothers. The result was negative. The discussions in the home reflected on his past illnesses and the HCV reason likely to have caused his difficulties. A few years later the witness appeared to be getting on well. Testing discovered how he had naturally cleated the HCV virus. The witness heard about the Penrose Inquiry and then the Skipton Fund, later the English Infected Blood Support Scheme (EIBSS). He applied for financial support but was unsuccessful. He explained the problems with getting hold of his medical records, and when he did there were huge sections missing. There was an option of making an appeal to EIBSS, so he worked hard to gather everything necessary. That too was (recently) rejected. He took that very badly. It felt like he was accused of being a liar. He had wanted to walk away from everything, including the Inquiry.
The second witness needed a hysterectomy. She suffered excessive bleeding and required blood transfusions. Later there was a notification of her having been infected with HCV by a blood transfusion. Later still, she had symptoms which were diagnosed as malaria, which was inexplicable. Then the witness was told she had cleared the HCV virus. However, she still had to behave as if she was infected. That impacted her work (in the NHS), her intimate relationships, her ability to donate blood, her need to reveal the infection in certain circumstances. Nobody could explain the malaria infection, nor he “clearing” of the HCV. The witness continues to feel like there is something crawling around inside her, making her ill. She still suffers from a variety of health issues, including auto-immune problems. The fatigue she feels is “crushing” and it is impossible to push through it, even just lifting a fork to eat. During investigations and consultations, she is usually asked if she might have had HCV. HCV seems to be the go-to explanation for her life-changing symptoms. The fact of her clearing the virus naturally has not diminished the health problems. It has cost the witness her marriage, she had to change her job as a radiologist, had to reduce working to two days a week, and had to endure significant loss of income. She had applied to the Skipton Fund but was turned down. On again reviewing criteria for financial support, she did not pursue it since she did not feel she met the criteria.
The third witness was a haemophiliac. There were the usual restrictions on things like sports, etc. When he got to secondary school he began to suffer from significant weakness and tiredness. He then started to experience fainting episodes at school and on trains. His mother thought he was maybe taking drugs. In time he received a letter saying he had been exposed to HCV. It was apparently something he would just have to live with. The situation meant he had to use barrier contraception and other kinds of restrictions. He had seen his brother die as a result of a co-infection with HIV and HCV. He subsequently was discovered to have cleared the HCV virus. This attracted the comment that he was “lucky”. When he married he applied for life insurance. Unusually, he was asked if he had ever been tested for HCV. By saying he had it meant he was refused the insurance. The witness applied to the Skipton Fund but was unsuccessful. He put a lot of work into his re-application but again this was refused, as was the appeal. Apparently, he did not meet the criteria. The medical notes had many missing sections, which were the very bits he needed to confirm his eligibility for financial support. Again, he was told he was considered lucky for having cleared the virus. The displayed consultant letter of support was very revealing, including the 5% chance of the virus reactivating.
The fourth witness was a severe haemophiliac. He went for a routine monitoring appointment and was told in the corridor he had HCV. The family were shocked. They were told not to tell anybody. The family was advised to have a separate bathroom for the witness, along with other significant arrangements to isolate him from them. They lived in a small village, so there was already stigma attached to being a bleeding-disorder family, so they did not want anyone knowing about HCV. At about 11 years old he started to feel very tired all the time. So, beyond the bleeds of a haemophiliac, there were continuing health problems which he described as being like having bad Covid all the time. Medical notes covering his teenage years referred to nausea, fatigue, headaches, a lot of missing of school, pale complexion, and more. They implied the witness was less concerned than his mother about the situation. He says this was part of his way of dealing with it, while his mum was the one that worried. He feels his mum was talked down to by the doctors. They gave her the impression that part of this was him being a typical lazy teenager. This was in stark contrast to his similarly-aged brother who was super fit, in the military, always well. The witness feels he just puts the problems in a box and doesn’t deal with them, but it was always in the background and so was “not great”. About aged 17 years old he was told he had “cleared the virus”. After the appointment when he was told this his parents asked if he had been told any other details, but he could not say. It was just something he did not have to worry about. Later he heard about the Skipton Fund, but never actually applied. At around this time he became aware of his medical records having gaps in them. He was encouraged to apply to EIBSS and was supported in the application. The witness began to be supported in December 2020.
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