Clinically Vulnerable Families ๐Ÿ’™๐Ÿ’œ๐Ÿ’— Profile picture
Apr 12, 2022 โ€ข 18 tweets โ€ข 8 min read โ€ข Read on X
๐ŸšจLiving with Covid #Access2Antivirals ๐Ÿšจ

Antiviral treatments are available to the 'Severely Immunosuppressed' a subset of the Clinically Vulnerable who remain at high-risk despite up to 5 vaccine doses.

๐Ÿงตwill cover how Vulnerable groups can access antiviral treatments.
1/ #Access2Antivirals  We often cannot access essential antivir
Early antiviral treatment is a vital tool to prevent severe outcomes in high-risk people.

Currently only a small group who have poor immunity following vaccination are allowed to access them.

Please look through this list to see if you qualify:

england.nhs.uk/coronavirus/doโ€ฆ

2/ Please follow the link in Tweet   * too many words
The 'Severely Immunosuppressed' group is smaller than those offered 5 vaccine doses & includes some never flagged as CEV.

So...
1) What should you do if you have Covid and DO qualify for antivirals?

2) What if you are Clinically Vulnerable/50+ and DON'T qualify on the list?

3/
What should you do if you have Covid and DO qualify for antivirals?

1. Make sure you have lateral flows at home. If you qualify for antivirals you can still order lateral flows for your own use.

gov.uk/order-coronaviโ€ฆ

4/ Check if you are eligible to order rapid lateral flow tests
2. If you, or a member of your household, have Covid symptoms you* should test.

*Keep testing for a few days, especially if at all symptomatic. Try to Isolate / HEPA / ventilation & FFP3.

3. Even a pale positive on lateral flow is still a positive.



5/
โณ๏ธYour 5 day timer starts from your symptom start dateโณ๏ธ

4. Report your result online.
(must be an NHS ordered test kit)
gov.uk/report-covid19โ€ฆ

In theory, this should be enough to trigger a referral.

Our experience shows you should also contact your GP or 111 / 119.

6/ GOV.UK  Report a COVID-19 test result  When was the test tak
Ask to be referred you to your local Covid Medicines Delivery Unit (CMDU) for triage. (They should not refer you to each other.)

5. The CMDU should contact you within 48hrs.

If they do not, or you are on day 5, you need to follow it up.

Do not give up!

7/ NHS   Covid Medicines Delivery Unit (CMDU)
6. If during triage you are told that your symptoms are too 'mild' refer them to the guidance.

8/

england.nhs.uk/coronavirus/doโ€ฆ
7. If you are told they only consider patients until day 6 or 7 refer them to this pathway.

By day 6/7 you would be limited to Remdesivir or 'off-label' (where a medicine used in a way different to that in the licence) access to the other treatments.

9/
england.nhs.uk/coronavirus/doโ€ฆ Please use the link.
โš ๏ธ BEWARE of WEEKENDS โš ๏ธ

Weekend access is generally poor. It appears to be a postcode lottery.

We are worried about the availability of services over the upcoming 4 day Bank Holiday weekend.

Some areas will offer treatment on day 6/7, but this is far from optimal.

10/
8. If you are refused treatment and you do qualify you need to take it further try escalating within the hospital via your specialist team / PALS but be prepared to take it all the way to your local MP if all else fails by day 5.

nhs.uk/nhs-services/hโ€ฆ

11/
We have heard that 10-15% of people who DO qualify can access these antiviral treatments.

Put another way, it means 85-90% can't access the antivirals.

We are highly concerned about this number!

12/
What if you are Clinically Vulnerable/50+ and DON'T qualify on the list?

The only possibility is accessing treatments via the Panoramic trial.

Lots of people can qualify for the trial but only 450 participants are added daily, of which only 225 are given the treatments.

13/ Who is eligible to join PANORAMIC:  You are currently experi
The demand has been high, due to the current surge.

However, this is currently closed for Easter...

It also appears to close over the weekends.

14/ Thank you for your interest in the PANORAMIC Trial, we are n
The Panoramic trial has a screening process and either your GP, or a study nurse or doctor will assess your eligibility and ask for your consent.

If you do qualify you will have a 50:50 chance of being offered antivirals, which should arrive the next day.

15/ Chronic Respiratory disease (including chronic obstructive p
Even if you don't receive the antivirals you will need answer questions online for 28 days and answer 3 phone calls to discuss with the trial team on days 7, 14 & 28.

16/ Taking part in the study will involve answering a few questi
We believe this constitutes health rationing.

Those 75+ should have been added to the antivirals list.

Plus, since treatments are already proven safe and effective for all Clinically Vulnerable / 50+, they should all have #Access2Antivirals through GPs and emergency GPs.

/END Sajid Javid   MHRAgovuk has just approved #Paxlovid, the cut
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More from @cv_cev

Feb 25
This 3yr anniversary that won't be in the news!

When the UK government rolled out the "Living with Covid" policy it simply scrapped protections and shifted to personal responsibility. For most, it meant "back to normal." For Clinically Vulnerable people, life became harder.
1/๐Ÿงต Image
The plan was based on a single assumption: that vaccines alone would be enough... vaccines due to be withdrawn this Autumn.

But for millions who are Clinically Vulnerable, vaccines werenโ€™t a magic bullet. Protection wasnโ€™t universal and some were left with little to none.

2/
๐Ÿ˜€Mask mandates ended
๐Ÿ“ฅFree tests were phased out
๐Ÿ‘ฉโ€๐Ÿ‘ฉโ€๐Ÿ‘งโ€๐Ÿ‘ฆSelf-isolation was no longer required

Covid was treated as a personal problem, not a public health issue. If you got sick, you were on your own.

3/
Read 11 tweets
Feb 18
๐Ÿ˜…CVF are relieved to announce that we will be representing you in the final section of the UK Covid-19 Inquiry looking at the ๐—œ๐—บ๐—ฝ๐—ฎ๐—ฐ๐˜ ๐—ผ๐—ป ๐—ฆ๐—ผ๐—ฐ๐—ถ๐—ฒ๐˜๐˜†.

It will consider the effects on keyworkers, vulnerable populations, bereaved, & mental health.

1/12 *Stick with this*
Protective measures were often described as "restrictions" and the lifting of measures described as the return of "freedom".

2/
๐Ÿš— Seatbelts were once seen as a "restriction" by some, but today with evidence & awareness, they are now considered essential for safety.

๐Ÿ’จ๐Ÿ˜ท The Covid pandemic was a missed opportunity to normalise airborne protections that protect health and save lives.

3/
Read 12 tweets
Jan 31
๐ŸšจClinically Vulnerable Families ๐Ÿ’™๐Ÿ’œ๐Ÿ’—

Our oral closing statement highlights 5 key concerns - however, further details will be explored in depth in our later written submissions.

1: Therapeutics programme - wasn't good enough!

1/
The immunosuppressed were left behind.

2/
What could we have done better?

Dame Kate Bingham is an independent and trusted voice. She has no reasons to defend decisions on therapeutics that weren't the right ones.

3/
Read 26 tweets
Jan 29
๐ŸšจProf Sir Pirmohamed

"Would you support the development of a more diverse portfolio of vaccine formats and antivirals, both as part of future pandemic preparedness plans and during [.] 'peace time' to ensure that Clinically Vulnerable groups are adequately protected?"

1/
"Absolutely, I think it is really important to make sure that we have good therapeutics and vaccines for the whole population."

2/
Q - Why is it important to have that breadth of formats?

...not many [immunosuppressed] were involved in the initial trials.

We now know [.] that booster doses help in terms of vaccine efficacy.

2/
Read 5 tweets
Jan 23
๐ŸšจJCVI - Wei Shen Lim๐Ÿšจ

Find out more about what led to his reaction below โฌ‡๏ธ

1/๐Ÿงต
Do you agree that mRNA COVID-19 vaccine protection has been shown to wane after 5-6m?
WSL: Yes

Covid-19 has not transitioned into a seasonal virus like influenza?
WSL: Yes

If so, why did the JCVI not recommend more frequent vaccinations for all clinically vulnerable groups?

2/
To explain:
"Clinically Vulnerable" is defined by the JCVI in the vaccine Green Book. They are all those who qualify for annual autumn vaccines based on risk.

A small subset are also offered vaccines in spring. Those 75+, care home residents and severely immunosuppressed.
3/ Image
Read 6 tweets
Jan 21
๐ŸšจDame Kate Bingham๐Ÿšจ
Dubbed the "hero in a pink jacket ๐Ÿ’•"

On Evusheld:
"I felt very strongly [.]. We were following a very clear 2 tier strategy where the CV immunocompromised were being deprioritised [.] I felt that was *manifestly* wrong both ethically and morally [.]"
1/๐Ÿงต
The above video was taken out of sequence. The below should give more context...

KB "So actually, the first goal was around protecting the UK population."

CTI [Hugo Keith KC]
"Do you think you succeeded on securing or making available those monoclonal antibodies?"

KB "No!"
2/
Kate goes on to make the argument that by not protecting this population, we were also promoting viral mutation and the evolution of variants.

3/
Read 23 tweets

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