14 March 2022
I want to share with readers of my letters in the Solomon Islands two late evening news stories relayed by Radio New Zealand that have a bearing on subject concerns I raised during the course of the past few days, the needs of the disabled during the ongoing Covid transmission, and my deep worries over the health prospects of NRH patients diagnosed and suffering from rheumatic heart disease (RHD) and those with rheumatic heart fever (RHF).
The first RNZ story is this, and I quote.
Pasifika warned to be vigilant against rheumatic fever
The parents of a young boy with rheumatic fever are urging adults, particularlPacific communities, to take sore throats and rashes in children seriously.
About 33 percent of the cases in 2021 were among Pacific peoples.
There is currently no vaccine and if left untreated can lead to heart disease or death.
Israel Ne'emia, 13, dreams of becoming a rugby great but recently it has been hard to walk or even get out of bed.
The Auckland boy was diagnosed with rheumatic fever when he was seven years old.
He loves playing rugby league and was in a training session when father dad Emanuel Ne'emia noticed something was a bit off.
"He was acting really weird, for example just passing the ball, dropping the ball. It was like he was in lala land and he has never been like that before," Ne'emia said.
Israel's mother noticed he also had a rash; she took him to White Cross but was told he was essentially fine but she kept pushing. took her son to a GP and he was then sent to Wait?kere Hospital.
Israel was there for a week in a room with six other children who were mostly from M?ori and Pacific communities, Ne'emia said.
He is the eldest of four boys and has a twin brother who was in shock at the news.
"Actually sad ... we're very close. I usually just ask him if he is alright and that, seeing if he needs help with anything, just checking on him whenever he is in pain," said his twin Uriah Ne'emia said.
It turned out Israel had a small leak in his heart. His parents had no idea what rheumatic fever was until they were handed a booklet.
For Israel, it means ongoing treatment including very unpleasant injections.
"When I first got the jab at the hospital it was really painful, it was stinging after when they pulled it out and that," Israel said.
Right now it is the only option to avoid acute rheumatic fever turning into rheumatic heart disease which could end with open-heart surgery.
"These painful injections are given every month for 10 years or more, and some people end up having them for the rest of their lives," Dr Dianne Sika-Paotonu, of the Rheumatic Fever and Penicillin Research Programme, said.
Her team is looking to develop a new penicillin injection that is more acceptable to patients.
This is something Israel's mum Jenny believes would bring her great comfort.
"I hate seeing him in pain, you just want to take that pain so he doesn't have to feel it," Jenny Ne'emia said.
Israel has been lucky that his disease was caught early because his parents noticed something was up and acted.
Israel wants to make it to the NRL. "Roger Tuivasa-Sheck really inspired me," he said.
A spokesperson for the Blues said Israel's favourite player Roger Tuivasa-Sheck has heard about his story and he would like to take some signed gear to Israel or someone else may deliver it while he was inside the rugby bubble.
Early diagnosis is something Minister for Pacific Peoples Aupito William Sio wishes could happen in all cases, or even better for the disease to be avoided entirely because it is preventable.
Aupito was 15-years-old when he was diagnosed with rheumatic fever, like Israel he too had dreams of being a sports star, but he had to pivot his dreams. He spent three months in bed, "it was just debilitating, I was feeling pain in my joints and I just didn't know why"."What I didn't do at that time was to talk to someone about the pain I was feeling in my joints, and just shrugged it off as sort of knocks from sports. If you are ever feeling not quite good about your body talk to someone and the pain that you are feeling.
"The approach that the government has taken, which I have led for Pasifika is the wellbeing, holistic approach because poverty and deprivation contribute to several illnesses including rheumatic fever, and what we have done as a Government is to ensure where the system is failing, and there is a lot of evidence for that in the last several decades, we've got to the target the specific support to then accelerate support to the vulnerable," he said.
The University of Auckland's medical faculty is working on developing a vaccine to help prevent rheumatic fever; the government has invested $10 million towards it.
What is acute rheumatic fever?
"Acute rheumatic fever is the body's autoimmune response to an untreated bacterial infection of the throat or the skin," Dr Sika-Paotonu said.
"This particular throat or skin infections are caused by group A Streptococcal bacteria or GAS bacteria for short.
"If very severe or repeated episodes recur and are left untreated, this can lead to rheumatic heart disease ... permanent heart damage can occur as a result. RHD remains a major cause of mortality worldwide, at the moment we don't have a GAS vaccine," she said.
How is it treated?
"So what happens is that a painful monthly injection of a type of penicillin is given to prevent any more GAS infections," Dr Ska-Paotonu said.
"By preventing GAS infections we are preventing acute rheumatic fever and stopping rheumatic heart disease from happening.
University of Otago senior lecturer, Pathology & Molecular Medicine, Dianne-Sika-Paotonu. Photo: Supplied
"Penicillin injections start when someone is first diagnosed with acute rheumatic fever.
"It is a painful and nasty way of being protected for ARF but it is all that is available right now. What is needed is a new penicillin, there is work that is being done to develop a new penicillin," Dr Sika-Paotonu said.
The Heart Foundation says government funding for a possible rheumatic fever vaccine is an exciting step forward, which could benefit hundreds of people.
End of quote.
Comment
How familiar is the above story familiar to many concerned parents in the Solomon Islands today, and how telling it must be for the dedicated doctors at the NRH who have to treat their patients suffering from rheumatic heart fever or rheumatic heart disease, many of them young patients, and without the independent budget for the NRH to transfer the patients assessed has having a good chance of recovery from RHD to an offshore hospital for heart valve treatment?
The second story is this, and I again quote.
Covid-19: Ministry of Health 'so far removed from the day-to-day lives of disabled people'
?p?tiki mother of three Kathleen Sanft is a "super-mum" by any measure, but Covid-19 infections in children are enough to make any parent sick with worry.
Despite every effort to protect them, her disabled 12-year-old daughter and non-verbal five-year-old son have tested positive for the virus.
Both children have autism and attention deficit hyperactivity disorder (ADHD), along with her non-verbal 13-year-old son.
Sanft's daughter is suffering the most, as Covid-19 spreads through the house.
"Her legs are sore, they're throbbing, she's on paracetamol. She's got hot tears, like hot and cold shivers, and her scoliosis is very painful," she said.
While the family is well-prepared, Sanft cannot help but worry about her children.
"We've also lost family, we've lost friends to Covid, so it's very real. We just hope that we are prepared enough," she said.
"I like to try and think of myself as super-mum ... but when it gets to a point where I physically can't, that's when I have great concerns for the children.
"Maybe one of us could get moved off to hospital if it gets so bad and that is when my anxiety will go through the roof."
Three support workers usually help with the children but the family must now isolate alone - a constant worry for disabled people who need assistance in daily life.
Concern about support for disabled people during the Omicron outbreak has prompted Disability Rights Commissioner Paula Tesoreiro to launch an urgent inquiry that will examine the continuity of essential in-home services.
Rachel Mullins uses a wheelchair and has a team of six support workers who come to her Christchurch home to get her up in the morning and into bed at night.
"I couldn't get out of bed without them, but I also probably couldn't go to the toilet without them either. If nobody was able to come I'd be stuck in a wet bed, which wouldn't be pleasant," she said.
Mullins worries about her support workers being forced to isolate, getting sick or unwittingly bringing the virus to her door.
"If I get sick, chances are there won't be a place for me in the hospital because the hospitals are potentially going to be overrun. My staff can't come in and help me because I'm contagious, but I can't do everything myself," she said.
"To say I've got a six-pronged plan for what happens for when my staff start falling - no I don't - and I just have to think it can't get that bad."
Mullins belongs to a Facebook group another disabled person has set up to help them find someone else to step in if their support workers are sick.
She said the Ministry of Health should be more responsive to disabled people.
"The ministry is so far removed from the day-to-day lives of disabled people," Mullins said.
"Unless disability affects you directly in your life, or you know someone with a disability, or you've broken your leg and been on crutches, nobody understands."
Kerri Bonner has three support workers who come to her Christchurch home every day.
She has cerebral palsy and uses a wheelchair, so they help her get up, cook and eat.
Bonner is blunt about the consequences of being left to fend for herself.
"I wouldn't survive," she said.
Like Rachel Mullins, she has devised her own plan in the absence of any targeted guidance or advice from the Ministry of Health.
Bonner feels the weight of the health and safety responsibility to her staff.
"I have gloves, aprons, I probably need to get some visors, which I'm having trouble tracking down online, but that's something else I probably need to invest in. It's a lot of extra pressure," she said.
"They want to know what I'm doing to prepare, but with no sort of guidance I'm pretty much making it up as I go along.
"There should be more support for those of us who receive Ministry of Health funding to keep us alive."
End of quote.
Comment
My great hope is that the disabled community in the Solomon Islands, especially those with Covid and having to isolate at home are getting assistance with food, water and other daily essentials.
I have the same concerns for the disabled who need help with transport to and from vaccination stations created by the government.
Previous letters about the needs of the disabled and posted on Facebook are treated as Covid notifications and effectively have blocked my seeing any reaction to the concerns I have.
Perhaps someone might comment in the media, or my clicking on the link to my website, to give me the assurances for the disabled I consider are needed.
Yours sincerely
Frank Short
