Benni Over has been living in quarantine with his family for almost a year. The 30-year-old is seriously ill. He suffers from gradual muscle wasting, and at the age of ten he was dependent on a wheelchair. Now he can only move his fingers and is also ventilated. The reason for his self-isolation is the corona crisis. Benni Over is a high risk patient.
Since the beginning of the pandemic, normal everyday life has no longer been possible for the Over family. You avoid any contact with the outside world. In addition to everyday care, the parents also took on complete intensive care. Before that, an outpatient service came into the house for ten hours a day. “We closed the bulkheads in February,” says Klaus Over, Benni’s father. “Nobody came in with us anymore.”
The vaccination was a glimmer of hope for the family. “Our doctor told us that we would definitely be the first to go.” Since the vaccine is not yet available in sufficient quantities to make an offer to every citizen, the federal government has to set priorities as to who will be vaccinated first to let. The Ministry of Health put an ordinance into force in mid-December that determines the exact sequence. The basis for this is, among other things, a recommendation from the Standing Vaccination Commission (Stiko).
After the recommendation was public, Klaus Over looked in the paper for the characteristics of his son’s illness. Vain. Although Benni is a high-risk patient, he does not appear in any of the groups. The top priority is the elderly over 80, nursing home residents and medical staff. Then come people with trisomy 21, patients after an organ transplant and people with dementia. People who, like Benni Over, are seriously ill and are ventilated at home fall through the cracks.
Many high-risk patients are not considered
Patients with neuromuscular diseases, deaf-blind people whose care is often provided through close physical contact, quadriplegics with high paraplegia whose respiratory system is very restricted, and people with other rare diseases that attack the lungs: according to the Abilitywatch Association, they are all in the Vaccination regulation not considered. 140,000 paraplegics and 100,000 people with neuromuscular disease live in Germany alone.
In addition, nurses are mentioned in the first group, but only if they work for certain facilities, nursing companies or in inpatient treatment, says Constantin Grosch from AbilityWatch at the request of NewsABC.net. However, people with trisomy21 and other intellectual disabilities are often cared for on an outpatient basis, and care is often provided by a self-procured employee or relatives.
“At some point we were pissed off”
The Over family want to know when it’s Benni’s turn. According to their own statements, they only get unclear answers to several inquiries to the Rhineland-Palatinate Ministry of Health. Anger follows disappointment. “At some point we were pissed off,” says Klaus Over. They cannot and do not want to accept that their son may not be vaccinated until the summer. Because Benni Over is running out of time. Certain therapies keep him alive. However, to protect against the virus, these have been taking place online since October. The therapists guide the parents. You can bridge this for a while, says Klaus Over. But that is limited.
The family turns to various media. In an article about Benni Over at Südwestrundfunk (SWR), the chairman of the Rhineland-Palatinate Ethics Advisory Board says that people in nursing homes and their staff should be vaccinated for the time being. Too much for the family. “Of course there is a point,” says Klaus Over. Just his son too. The paradox: If Benni Over had been housed in a home, he would have been the first to get the vaccination. The home care by relatives is therefore trampled underfoot, his father thinks.
A “cry for help”
After an emergency around New Year’s Day, vaccination soon becomes more and more urgent. More than 2,200 MPs write to Benni Over and his parents. The headings are “cry for help” and “cry for help”. The family receives positive answers from many of the parliamentarians who have been contacted. Only the vaccination appointment remains. Another call for help, this time directly to the SPD Prime Minister Malu Dreyer, is finally moving something. Benni Over and his parents are brought forward and vaccinated in early January.
A big success. Because shortly before Christmas, the Mainz Ministry of Health and the Ethics Advisory Board for Corona Vaccinations Rhineland-Palatinate announced that unfortunately there could be no exceptions for high-risk cases outside the vaccination sequence specified by the federal government.
Stiko revises recommendation
Exactly one day after Benni Overs vaccination, the Stiko issued a revised recommendation. And records individual decisions for patients with rare, serious illnesses that are not explicitly mentioned. At the request of NewsABC.net, the press office of the Federal Ministry of Health only answered vaguely whether Federal Health Minister Jens Spahn would follow this and add a corresponding passage to the vaccination ordinance.
The implementation of the vaccinations lies with the federal states. The vaccination ordinance and the Stiko recommendation would enable them to “prioritize the epidemiological situation on site and also take practical considerations into account.” This means that in case of doubt, the states could also make individual decisions without the passage in the Regulation is supplemented. “The decision is then to be made on the basis of the infectious findings available in each case and the current recommendation from Stiko,” writes the Federal Ministry of Health (BMG).
The Over family would still be happy if the regulation were to be amended. “That would make it more official,” says Klaus Over. The three of them took your prick well. The second vaccination will be given at the end of February. Meanwhile, other parents who are in a similar situation would also contact Klaus Over and ask him for advice. Most of all, the family is relieved. “We wanted to achieve that for Benni,” says Klaus Over. It is doubly good when something pops up for the other people affected.