Thread by @yomioyelami

My short thread on the #SCDBill2020 starts now.

Here are my personal observation on the right step in the right direction by @NGRSenate. The bill as sponsored by Senator Sam Egwu is 'for an act to provide for the prevention, control and management of sickle cell anemia...' /1

https://twitter.com/yomioyelami/status/1275523229956923394

My observations which I believe will strengthen the #SCDBill2020 and help it achieve its objectives include:

1. Section 1 labeled sickle cell anemia 'a disease'. This, I believe, will send wrong signal and further deepen stigmatization against persons living with #SickleCell /2

In a country like #Nigeria where you can be stigmatized on just about anything - religion, minority, penury, etc - the tag 'disease' will only become more fuel for stigmatization against these persons.

Enough shaming already exists for them in the society as a whole /3

Dear @NGRSenate of @nassnigeria do not validate social stigma against persons living with #SickleCell in Nigeria with that word 'disease'.

The word 'disorder' will still achieve exactly what you intend in the #SCDBill2020. I suggest that.

I continue tomorrow

Thank you 🙇 /4

I am back...

DAY 2

Section 3 (1)of the #SCDBill2020 in @NGRSenate established: 'the prevention, control, and management of the disease as provided for under this Act shall be directed, coordinated and supervised by...the Ministry'.This is fair as health is duty @Fmohnigeria /5

As part of the duties of 'the Ministry', (2) (i) of the same section 3 added and I quote verbatim:

'to encourage and impress on members of the public, including but not restricted to intending couples, to undergo blood genotype test for the purpose of knowing, discovering... /6

...or ascertaining their blood genotype and for the avoidance of marriages or matrimonial unions that will or are likely to produce children prone or susceptible to the disease'

My issue is 'how'?

The 'what' is commendable - to know, discover or ascertain blood genotype /7

As it stands, genotype tests are conducted daily in Nigeria but many persons have complained of inaccurate diagnosis. They say 'I was AA when I checked last time, now they are telling me it is AS'.

Indeed, some have married before they knew their 'supposed' genotype is wrong /8

The commonest technique named 'haemoglobin electrophoresis' sometimes lead to error due to reasons like human handling.

A better method is HPLC - High-Performance Liquid Chromatography (also called Haemoglobin Profiling test).
This technique gives a more appropriate result. /9

All the variants of haemoglobin in a human's blood such as hb F, hb A, hb A2, hb S, hb C, etc. will be discovered in their varying percentages.

This is how to 'ascertain their blood genotype' as stated in Section 3 (2) (i) of #SCDBill2020 before @NGRSenate of @nassnigeria /10

Getting blood genotype right in #Nigeria is first step in the right direction 'for the prevention, control, and management of sickle cell anemia' which is the big goal of #SCDBill2020.

Dear @NGRSenate of @nassnigeria see to this in order to do a good job

Till tmoro. Thanks /11

Hi. I am back.

DAY 3
The use of high-performance liquid chromatography HPLC should be promoted by @Fmohnigeria as standard procedure for genotype testing
'The Ministry' as stated #SCDBill2020 can avail itself of already-existing Federal Medical Centres and Teaching Hospitals /12

To my 3rd observation.
In the same Section 3 (2)(i), it was stated '...for the avoidance of marriages or matrimonial unions that will or are likely to produce children prone or susceptible to the disease'.

Dear @NGRSenate of @nassnigeria this part is very slippery. /13

Looks very simple, 'stop marriages and you stop #SickleCell' but it's not.

What's humanity without relationships? Nothing!

Dear @NGRSenate you need to tread with caution here.

To simply package a document and say, 'no more AS and AS or AS and AC marriages' may not work /14

What happens to the @UN Declaration of #HumanRights for which #Nigeria is a signatory

What happens to the African Charter on Human and Peoples' Rights which #Nigeria ratified as a member of the @_AfricanUnion

Right to association is a fundamental freedom, it's inalienable /15

Dear @NGRSenate of @nassnigeria, there is a way to go about this.

No hair-splitting. It is the way of qualitative counseling conducted by qualified professionals.

This has a higher chance to make couples come to informed decisions rather than prohibitive legislation /16

Humans are easily influenced by counsels than commands

Dear @NGRSenate of @nassnigeria, initiate a robust framework for counseling in #SCDBill2020, it can help to achieve '..avoidance of marriage and matrimonial unions...' as mentioned in Section 3 (2)(i)

I continue tmoro /17

And again, I am back

DAY 4
My observation today is from Part II of the #SCDBill2020 titled 'Accredited Participants'

Section 4 (2) states: 'In accrediting hospitals and medical clinics under this section, the Ministry (i.e. @Fmohnigeria) shall ensure that -

/18

(a) equal number of hospitals or medical clinics are accredited in each state of the Federation'.

This is not good for #Nigeria as a federation if we really want to make a success out of this bill. Otherwise, this could jolly well be another piece of document gathering dust /19

With 36 states - all having unequal population size and land mass - the aim of 'prevention, control and management of sickle cell anemia' cited in the preamble of this bill may not be easily accessible

Assume we follow the format of senatorial districts, that is 3 per state /20

How easy will it be for residents of Lagos, Kano, and Rivers with their huge population?

But we have existing Federal Medical Centres, Teaching Hospitals of federal universities.

That's a structure already using federal government might. /21

Then, each of the state will be called upon to make available their general hospitals and/or teaching hospitals of state universities

With this, we should have at least 5 medical facilities in each state to cater to requirements of the laudable #SCDBill2020 in formation /22

Dear @NGRSenate of @nassnigeria our population is close to 200 million and #Nigeria's national burden of #SickleCell is the largest in the world.

Let's have a #SCDBill2020 that will be far-reaching in implementation and impact

Think health. Think life.

Till tmoro. Thanks /23

And I am back

DAY 5
The #SCDBill2020 on the floor of the Red Chambers of @nassnigeria, that is @NGRSenate also provides for punitive measures against a person who disobeys the Act

And that's fine for what's a law without consequences?

Part IV of the Act is tagged OFFENCES /24

Section(9)(1) reads: 'Any person who diverts to his or another person's private use, sale or appropriation any funds, drugs, literature of material donated, procured or available for the benefit of the public for the prevention, control or management of the disease under... /25

'..this Act commits an offence'.

Section(9)(2) continues: 'Any person who commits an offence under this section shall be liable -
(a) on first conviction to a term of imprisonment which may extend to three years or a fine of five hundred thousand naira (N500,000) and... /26

(b) on subsequent conviction to a term of imprisonment which may extend to six years or a fine of eight hundred thousand naira (N800,000)'

My thoughts
I believe that the national burden of #SickleCell in #Nigeria compels us not to treat this issue with kid
gloves. /27

For someone to be bold to divert materials for public benefit to private interest, he/she should be well punished
While the prison term is good, the fines are too trivial to induce fear in persons who show such behaviour.
The impact of their criminal acts is not quantifiable /28

Dear @NGRSenate of the @nassnigeria please look into the punitive measures attached to this section of #SCDBill2020.

The idea of this Act is commendable. Let it send the right signals. Please stamp out corruption in #Nigeria

Two more days, and I will be through.

Bye now /29

Yaayy!

It's DAY 6

My observation on the #SCDBill2020 with @NGRSenate of @nassnigeria today comes from PART V - MISCELLANEOUS PROVISIONS

Specifically, Section 12

This section talks about hospitals and medical centres accredited by the Ministry @Fmohnigeria under the Act.. /30

..maintaining a special section in their facility where intending couples
(a) will carry out blood genotype tests
(b) receive advice and counseling
(c) in appropriate cases obtain medication or treatment.

Further, it talks about when intending couples have genotypes that.. /31

... may make their children prone to #SickleCell not to go into marriage.

Then, it mandated hospitals/doctors to advise the intending couple. And should reduce the advice into writing with records of the full name and other details of the persons involved. /32

Then, Section(12)(4) made some sweeping remarks
I quote verbatim
'Notwithstanding anything to the contrary in any provision of this Act
(a) No person who goes into any marriage contrary to the advice or counsel of any accredited hospital or medical clinic under this section.. /33

.shall be entitled to any medication, treatment or drugs as a result of the occurrence or effect of the disease arising or resulting from such marriage at the expense of the Ministry or government of the federation; and
(b) No child born under such marriage shall be entitled../34

..to any medication or drugs at the expense of the Ministry or government of the federation.'

First, I think it is good for hospitals to have special sections
Second, I feel that it is too late at that stage if couples are just getting tested. Well, better late than never /35

Third, I believe that advice/counsel put into writing with full names + other details is akin to arm-twisting or duress. That is a violation of rights.
Fourth, to say you will not care for your citizens is unfair.
Fifth, to say you will not care for children of #Nigeria... /36

...is unacceptable. 'The fathers have eaten sour grapes but the children's teeth is set at edge', no more that's what the Scriptures say.

Dear @NGRSenate of @nassnigeria, look into these observations.

Think #SickleCell! Think #HumanRights! Think #Nigeria!

I round up tmoro /37

I am so happy 😊

DAY 7 IS HERE

Thank you, 9th @NGRSenate of @nassnigeria for this bill

Few recommendations to make the #SCDBill2020 achieve its intent 'for prevention, control, and management of #SickleCell anemia in #Nigeria' as emphasized in the explanatory memorandum /38

1. I reiterate the importance of genotype testing for all. It should be accessible in rural and urban areas. It should be free. In cases where there is conflict in genotype result, let HPLC (aka haemoglobin profiling test) be available at reduced cost in designated centres /39

2. I express the need for newborn screening policy to be introduced into this #SCDBill2020. It will impact positively on the health of #Nigeria going forward. Not only for #SickleCell but for many other treatable disorders. It is for all babies between day 0 - 28 after birth /40

3. I find that this #SCDBill2020 focuses more about prevention and control than management of #SickleCell. It doesn't show much interest about persons already living with the disorder
As much as you can, let this bill show empathy at least in the area of the health challenges /41

This is by promoting an inclusive National Health Insurance Scheme for persons living with #SickleCell under the vulnerable persons section
My task is done in best interest of #SCDBill2020

Thanks again Senator Sam Egwu @NGRSenate @nassnigeria @Fmohnigeria

Long live #Nigeria/42