SUU, Alm.del - 2018-19 (2. samling) - Bilag 43: Henvendelse fra Torben Thomsen om Lyme Borreliose

Sundheds- og Ældreudvalget 2018-19 (2. samling)
SUU Alm.del Bilag 43
Offentligt

ABIE, Pascale Monique

[email protected]

Please acknowledge receipt of this correspondence

To:

Director General Dr. Tedros Adhanom Ghebreyesus,

WHO Headquarters in Geneva

Avenue Appia 20

1202 Geneva, Switzerland

Telephone: +41-22-7912111

Pascale M. Abie, Administrative Assistant to the Office of the Director-

General

Cc:

Office of the Director-General

[email protected];

[email protected].

From: xxxx

Subject:

Removal of code for Congenital Lyme & other ICD11 Transparency

Issues

I am sending this letter to you at the request of members of my constituency, many of

whom are in rural communities, and who are being affected by tickborne infections

These include men women, and children, and indeed the unborn child, who are being

infected with these tickborne infections, often unrecognised by patient and the medical

community alike.

Globally countries have committed to the vision of leaving no one behind in the context

of the Sustainable Development Goals. In addition, countries are committing to the

strategies of Universal Health Coverage to enable all who need health care will receive

the appropriate health when they need it.

As member states of the World Health Organization (WHO) we trust WHO to be

transparent in all actions and so I believe there should be review of a process which

questions WHO's reputation on transparency and I strongly believe you will also agree

with my request for a review.

I request WHO reinstate 1C1G.2 Congenital Lyme borreliosis into the ICD11

and ensure all Lyme codes presented in the June 18, 2018 ICD11 release remain

visible and accessible to future ICD11 users. This includes the life-threatening

conditions of 6D85.Y Dementia due to Lyme Disease and 8A45.0Y Central Nervous

System demyelination due to Lyme borreliosis. I also urge WHO demonstrate its

stated commitments to transparency and stakeholder engagement.

SUU, Alm.del - 2018-19 (2. samling) - Bilag 43: Henvendelse fra Torben Thomsen om Lyme Borreliose

1C1G.2 Congenital Lyme borreliosis was removed in a very non-transparent

manner from the ICD11 on December 17, 2018. This action, to remove this

condition, was taken six months after

the release of WHO’s ‘stable’ ICD11 Report.

Correspondence from a member of the ICD11 Medical and Scientific Advisory

Committee (MSAC) stated,

“This was in response to a request for the removal of

Congenital Lyme borreliosis by the Public Health Agency of Canada (PHAC)...”

The concern relates to the removal of the ICD-11 codes for congenital Lyme

disease. They were present in June 2018 and they disappeared by December

2018. There has been no clear evidence based explanation provided for these actions

that has been made public. By the removal of this codes, mothers with Lyme Disease

and their children are being left out of the counting at national and global level: we are

leaving them behind. The opportunities for documenting the syndromes and spectrum

of pathologies associated with vertical transmission of Lyme Disease will be lost, unless

you re-instate this very important IC1G.2 Congenital Lyme code.

I seek your office to work with your technical team to review the process leading to this

decision, to get other sources of data and allow the voices of the patient groups and the

community to be heard. I can provide to you the names of scientists and patient

advocate groups who are willing to accompany the process of revisiting the position of

congenital Lyme Disease in the ICD11 codes.

Transparency and accountability of this process is lacking.

We ask the following responses from the WHO:

Why was the code removed?

What was the process that led to this removal?

We have been informed that an ‘external group’ was appointed who made this decision.

Who are the members of this group?

Detailed scientific data was provided to get Congenital Lyme accepted as a code. What

scientific data was reviewed to subsequently re-review this

‘inclusion’

decision, and what

was the difference from the initial scientific data and subsequent scientific data that lead

to reversal of the decision,

to have the code ‘excluded’?

Other congenital infections have been identified by ICD codes: both viral and bacterial

infections. We want clarification as to what was the criteria for acceptance was for these

other conditions, and where Congenital Lyme failed to meet the same criteria, in the re-

review of the data that was provided

by this ‘unidentified’ external review group.

We are additionally concerned that other ICD11 codes for Lyme Borreliosis are under

threat; and would like re-assurance that this will not happen. And that the same lack of

transparency that has occurred with Congenital Lyme will not occur again.

SUU, Alm.del - 2018-19 (2. samling) - Bilag 43: Henvendelse fra Torben Thomsen om Lyme Borreliose

All Lyme codes presented in the June 18, 2018 ICD11 release remain visible and

accessible to future ICD11 users. They are as follows:

ICD11

1C1G Lyme borreliosis

1C1G.0 Early cutaneous Lyme borreliosis

1C1G.1 Disseminated Lyme borreliosis

1C1G.10 Lyme Neuroborreliosis

1C1G.11 Lyme Carditis

1C1G.12 Ophthalmic Lyme borreliosis

1C1G.13 Lyme arthritis

1C1G.14 Late cutaneous Lyme borreliosis

1C1G.1Y Other specified disseminated Lyme borreliosis

1C1G.1Z Disseminated Lyme borreliosis, unspecified

1C1G.2 Congenital Lyme borreliosis (now removed)

1C1GY Other specified Lyme borreliosis

6D85.Y Dementia due to other specified diseases classified elsewhere; Dementia

due to Lyme Disease

9C20.1 Infectious panuveitis; Infectious panuveitis in Lyme disease

9B66.1 Infectious intermediate Chorioditis; Infectious intermediate uveitis in Lyme

disease

8A45.0Y Other Specified white matter disorders due to infections; Central Nervous

System demyelination due to Lyme borreliosis

On behalf of our constituency, we ask for immediate re-instatement of Congenital

Lyme to the ICD 11 codes. And we ask a guarantee that you preserve current

codes, ensuring they not be tampered with, as has occurred with Congenital Lyme.

I therefore would also urge the WHO to demonstrate its stated commitments to

transparency and stakeholder engagement by hosting a meeting with patient

stakeholder and with doctors, scientists, lawyers, human right experts and elected

officials who champion their cause.

Thank you.

Name etc.