ADVOCACY,€¦ · Advocacy, Your Constitutional Right! The Basic Advocacy Toolkit 1 Acknowledgements. T he Basic Activist Toolkit: Advocacy, your constitutional right was develop

MTAAG+ Positive Malaysian Treatment Access

& Advocacy Group

ADVOCACY, Your Constitutional Right!The Basic Advocacy Toolkit

1Advocacy, Your Constitutional Right! The Basic Advocacy Toolkit

Acknowledgements.

The Basic Activist Toolkit: Advocacy, your constitutional right was develop with the aims of strengthening the capacity of new activist group just have trained from community IPR & Access To Medicine workshops. So, they can using the basic tool to send out the simplified message.

The Positive Malaysian Treatment Access & Advocacy Group (MTAAG+) and The Coalition Plus partnered to produce this toolkit, to be use in further training workshop nationwide in Malaysia and can be use as example in other parts of the world.

The Toolkit Project Team contributed and written by Edward Low and Kavithaa Venugopal, a legal consultant. This Basic Activist Toolkit was made possible through UNITAID.

The team gratefully appreciates reviews and additional input by Sangeeta Shashikant of TWN.

Graphic design by Kugantharan of 504 Studios.

About MTAAG+:

Positive Malaysian Treatment Access & Advocacy Group (MTAAG+) is a group of local PLHIV was empowered during a ITPC Regional workshop held in Pattaya in September, 2004. They realized the need to form a strong poz-representative in Malaysia to speak out and be heard in international events. After several months of planning and execution, MTAAG+ was formed on the 21st, December, 2005.

MTAAG+’s mission is to develop a national network for better access to ARV treatment and common agenda for all PLHIV & Hep C groups in Malaysia.

www.mtaagplusmalaysia.wordpress.com

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Every citizen of Malaysia has the right to freedom of speech and expression. It is important to remember that every Malaysian citizen is also promised the right to peaceful assembly without arms. This is provided under Article 10 of the Federal Constitution. Be brave and voice out your concerns, it is your fundamental right!

The purpose of advocacy is not to be disruptive or violent, but rather to be loud and to be heard.

Advocacy, Your Constitutional Right! The Basic Advocacy Toolkit

ADVOCACY, Your Constitutional Right!The Basic Advocacy Toolkit

NO. TOPIC 1.0 ABOUT THIS TOOLKIT 2.0 ORGANISING AN ADVOCACY CAMPAIGN 3.0 SOCIAL MEDIA 4.0 SECURITY MEASURES 5.0 PROMOTING THE CAMPAIGN 6.0 MANAGING THE PRESS 7.0 DO’S AND DON’TS 8.0 OVERCOMING THE FEAR OF VOICING OUT APPENDIX 1 – SAMPLE LETTER TO THE AUTHORITIES & SAMPLE LETTER TO THE PRESS APPENDIX 2 – SAMPLE PRESS STATEMENT APPENDIX 3 – SAMPLE OPEN LETTER APPENDIX 4 – SAMPLE INFOGRAPHICS APPENDIX 5 – SAMPLE T-SHIRT APPENDIX 6 - SAMPLE FLYER 9.0 REFERANCES

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1.0 ABOUT THIS TOOLKIT

1.1 Aim of this toolkit

To increase the capacity of the patient groups to self-organize and advocate for rights for health, self-determination, and wellbeing.

Educate individuals on the simple process of organising and advocating a cause.

Educate budding activists on effective ways to be an activist. To empower individuals to create more impact and change.

1.2 Who can use this toolkit?

This is a basic toolkit for budding activists.

2.0 ORGANISING AN ADVOCACY CAMPAIGN

2.1 The Objective and Goal

K.I.S.S – Keep it simple and straightforward!

Identify a clear objective;


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The outcome sought; Strategy; and Who are the target group

Examples of objectives:

To create pressure on policy makers and law makers; or To promote awareness on the plight of people.

Examples of strategy

To continue the event or cause; To continue exerting pressure; or To keep the momentum in place.

2.2 Planning the advocacy campaign

Identify resources available; Date; Time; Venue; Pre-campaign promotion; Volunteers; Communication with the authorities; and Ensure adequate security measures are in place.


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2.3 Promotion & Post Campaign Coverage

Take part in National Action Day activities i. Designate a particular time to call in and/or fax Members

of Parliament, Ministers and the Prime Ministers Department to advocate the cause and exert pressure for change.

Social Media – Facebook, Twitter, Instagram, etc; Press – Local newspapers, radio, television, electronic media,

international media, etc; and Leaflets, fact sheets, posters, bunting, banners and flagpoles Open letter/signature campaign via websites such as

www.change.org. (A sample open letter can be found in Appendix 3)

Target the less mainstream media because:- i. less likelihood of it being excluded due to governmental

control over the media; and ii. mainstream media sometimes places more emphasis

on trending news and the campaign may receive less emphasis as it may not be trending at that time.

Electronic media is more effective as it can be easily shared in the social media and by other electronic means and can be accessed all over the world. Examples of effective electronic media include, Free

Malaysia Today, The Sun, Malaysia Kini and Malaymail Online.

MODERN ADVOCACY TOOLKIT


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International media is also a powerful tool to send out a message, as it has a wider audience and is subscribed by people all over the world. Examples of powerful international media that can be

targeted include, Associated Press, Bernama, Bloomberg News, and CCTV News.

Advocacy should continue even after the campaign is over, to inform the public of what transpired from the campaign.

3.0 SOCIAL MEDIA

3.1. Day to day social media

Examples of social media: Facebook, Twitter and Instagram. Create a Facebook page for the campaign. Publicise it widely on all social media platforms available. Encourage promotion and sharing on social media.

Examples i) We will be looking out for your posts and tweet, please

include @worldaidsday in all your tweets; and/or


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ii) Please use #worldaidsday in all your tweets, facebook and Instagram posts so that it appears when people search on that hashtag

Use real life people and their experiences to illustrate the personal effect of the issue (seek their approval prior to publicising their experiences).

Using shocking statistics and information may generate interest.

Use visuals such as videos and posters which can be easily shared on social media.

Provide examples of social media posts you would like your target group to share on social media.

Publicise outcome of the campaign after the campaign.

3.2 Amplifying your Message

Use platforms like thunderclap to amplify your message (https://www.thunderclap.it/?locale=en)

What is thunderclap? Thunderclap is a tool that lets a message be heard when

you and your friends say it together. If you reach your campaign goal (the target number of

people you foresee supporting your project - this number ranges from 100 to 500 and is based on whether you're an individual, a team of people or a corporation), then the specially crafted message and link you create will be sent out at the same time by those 100 people to their collective followings.

How does it work? When you reach your supporter goal, Thunderclap will

blast out a timed Twitter, Facebook, or Tumblr on your behalf, to create a wave of attention.

The basic account for thunderclap is free of charge


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4.0 SECURITY MEASURES

4.1 Managing the Authorities

Identify the authorities that needs to be informed Examples: Relevant ministry, police, local council (e.g. Dewan Bandaraya Kuala Lumpur, Majlis Perbandaran Subang Jaya, etc.)

Communicate officially with them to inform them of the campaign (e.g. formal letters and/or official meetings) (A sample letter to the authorities can be found in Appendix 1.)

Communication with the authorities prior to the campaign will assist in minimising adverse reactions from the authorities.

4.2 Other practical security measures

Assess the risk involved; Coordinate with police and RELA if a large crowd is

expected; Ensure medical assistance is on standby if a large crowd is

expected; and/or Liaise with the premise managers to ensure there are

adequate security controls.


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5.0 PROMOTING THE CAMPAIGN

5.1 The different types of promotional materials.

i. Leaflets; ii. Fact sheets; iii. Posters; iv. Banners; v. Bunting; and vi. Flagpoles.

5.2 Important things to keep in mind when designing promotional materials

Keep it simple. Message should be clear and easily understandable. Less colour and simple designs will be cheaper and cost

efficient. Provide contact information on leaflets and fact sheets for

interested parties to get more information on the campaign. The preferred sizes of posters are A2 or A3. Sample size of a banner would be 4 feet x 6 feet and easily

held by 2 people.


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5.3 How to design and come up with promotional materials?

Ideas can be derived from other campaigns, the internet and previous similar campaigns.

Printing shops would be able to assist with the design and coming up with promotional materials.

5.4 Promotional gimmicks

How to get the attention of the people?

Mascots; and/or Giant Promotional Balloons

5.5 Merchandises

i. Handing out merchandises is a good way to promote a campaign as it will raise question on the minds of those receiving the merchandises.

ii. Examples of merchandises: T-shirts; Button badges; Pens; and/or Notepads.


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6.0 MANAGING THE PRESS/MEDIA

6.1 Organising a press meet

i) Date; ii) Time; iii) Venue; iv) Invitation to the press/media (A sample letter can be found in

Appendix1); v) Identify clear objective of the press meet and what is sought to

be communicated; vi) Anticipate possible questions from the press and prepare to

answer; and vii) Prepare a press statement.

6.2 Press statement

Clear and simple. One page is normally sufficient. Example of press statement can be found in Appendix 2.


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6.3 Post-campaign articles and media coverage on the outcome should be widely publicised to inform the public and interested parties of the outcome.

7.0 DO’S AND DON’TS OF CAMPAIGNING

7.1 The do’s

Inform participant of the possible mishaps (if any) to ensure they are prepared.

Inform participants of what they should bring (e.g. NRIC, cash, salt in small packets, drinking water, chocolate/energy bars, basic first aid, personal medical necessities, power bank, phone, etc.).

Educate participants of important contact person’s, and their contact numbers, in the event of an emergency (e.g. lawyers, police, organisers of the campaign, ambulance, etc.).

Educate the participants on the importance of a peaceful campaign.

7.2 The don’ts

Provoke to police or any other authorities. Cause traffic congestion.


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8.0 OVERCOMING THE FEAR OF VOICING OUT

Do not succumb to provocation. Work as a team with allies. Insist on peaceful demonstration. You only need as little as three people to organise a

demonstration or flash mob. It is normal for the police to approach for questioning, do not

panic. Be cooperative if the police approach.

Flash mob organised by Positive Malaysian Treatment Access & Advocacy Group during the IDEA Forum, in front of Micheal Froman, US Trade Representative.


Source: Kyodo News, photographer.

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APPENDIX 1

Sample Letter to the Authorities

ABC Advocacy Group (718556-X) B-1-2, 3 Two Square, No.2, Jalan Saamy, Selangor, Malaysia. Tel: +603-71235677 Fax: +603-71235678 Ibu Pejabat Polis Diraja Malaysia Bukit Aman 50560 Kuala Lumpur. 22nd, January 2016

Dear Sir/Madam, PEACEFUL MARCH TO OPPOSE THE TRANS-PACIFIC PARTNERSHIP AGREEMENT (“TPPA”) We write to inform you of our intention to organise a peaceful march to demonstrate our opposition of the TPPA. 2. To give you some background, we represent patients living with HIV and Hepatitis C (“patients group”). We are deeply dismayed of the conclusion of the secretly negotiated TPPA which threatens future access to affordable generic medicines and other sustainable development goals. The objective of our march is to demonstrate the plight and concerns of the patients group and to call on the Government to reject the TPPA. 3. We would like to inform you that we will be organizing a march, the details of it are as follows:

Date: 23rd, January, 2016.

Time: 1.00pm

Venue: Maju Junction marching to Dataran Merdeka, Kuala Lumpur.

4. Your cooperation on the matter is appreciated. For more information, kindly contact Ali Bin Mohd Bakar, Director of ABC Advocacy Group at +6011-3322456.

Thank you.

Yours Truly,

Ali Bin Mohd Bakar, Director.


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Sample Letter to the Press

ABC Advocacy Group (718556-X) B-1-2, 3 Two Square, No.2, Jalan Saamy, Selangor, Malaysia. Tel: +603-71235677 Fax: +603-71235678 News Editor/Media/TV 22nd, January 2016

Dear Sir/Madam, PATIENT GROUPS EXPRESS DEEP DISMAY AT THE CONCLUSION OF THE SECRETLY NEGOTIATED TRANS-PACIFIC PARTNERSHIP AGREEMENT (“TPPA”) THAT THREATENS FUTURE ACCESS TO AFFORDABLE GENERIC MEDICINES AND OTHER SUSTAINABLE

DEVELOPMENT GOALS

We also call on Parliament to reject the TPPA

ABC Advocary Group and its allies will march against the TPPA. The details of the event are as follows;

Date: 23rd, January, 2016.

Time: 1.00pm

Venue: Maju Junction marching to Dataran Merdeka, K.L

For more information, contact Ali Bin Mohd Bakar, Director of ABC Advocacy Group at +6011-3322456.

Yours Truly,

Ali Bin Mohd Bakar, Director.


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APPENDIX 2

Sample Press Statement For Immediate Release: 6th December 2016 Unavailability of Affordable Hepatitis C Treatments Threatening Malaysian Lives. KUALA LUMPUR: The World Health Organization (WHO) recently reported that over one million people in low- and middle-income countries have been treated with a revolutionary new cure for hepatitis C since its introduction two years ago. Hepatitis C Virus (HCV) is highly infectious, and one of the leading causes of death around the world where at least 185 million people have been infected. Globally, the morbidity and mortality attributable to HCV infection continues to increase and approximately 700,000 people die each year from HCV-related complications which include cirrhosis and hepatocellular carcimoa (HCC). Egypt alone has treated approximately 670, 000 people with new anti-virals that can cure HCV. Egypt has access to affordable anti-virals due to generic competition, enabling the Egyptian government to massively scale-up treatment. Sofosbuvir, the backbone for HCV treatment which is exorbitantly priced at US$64,680 in the US, is available in Egypt for as low as US$150. Cheaper quality generic Sofosbuvir is also available from countries such as India for about US$300 for a 12-week treatment course.


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In Malaysia, a 2009 estimate states that at least half a million people are believed to have been infected with HCV. Due to the asymptomatic nature of the disease, most infected persons are unaware of their infection. Thus in reality, many more are likely to be infected. Those diagnosed do not have access to affordable treatment. In 2015 a patient in a private hospital was charged RM385, 000 for a 24-week course. This unreasonable price tag by Gilead a multinational pharmaceutical company threatens the lives of the thousands of Malaysians that needs prompt access to affordable treatment. We call on the Ministry of Health (MOH) to urgently take the necessary steps to ensure that Hepatitis C treatment is available at affordable prices for all in need. Contact communication officer, Ali Bin Mohd Bakar +6011-3322456. ABC Advocacy Group Email: [email protected] Tel: +603- 7123 4567 Fax: +603-7123 4568 Website: www.abc.com Twitter: @abc


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APPENDIX 3

SAMPLE OPEN LETTER

GLOBAL ACTION AGAINST GILEAD’S SUPER EXPENSIVE SOFOSBUVIR

Hepatitis C Patients in Malaysia Urgently Need Access to Affordable Sofosbuvir

Hepatitis C, a fatal but curable disease, is a global health concern. 700,000 people around the world die every year due to Hepatitis C. Globally 150 million people have chronic infection. In Malaysia, it is estimated that at least 453 000 people are infected with hepatitis C virus (HCV). This is a low estimate as many people are unaware they may be infected.

The standard treatment for HCV is conventional Interferon Alfa (IFN)/Pegylated Interferon Alfa (PEG- IFN) with Ribavirin but this regimen has severe side effects and is intolerable to many patients. The recent launch of oral direct acting anti-virals (DAAs) is revolutionizing HCV treatment with a good efficacy profile, shorter treatment duration with limited side effects.

Sofosbuvir (SOF), in particular, used in combination with another medicine (e.g. with Ribavirin or even better with Daclatasvir) is known to effectively treat HCV infection particularly Genotypes 1 and 3 that are most common in Malaysia. SOF and Daclatasvir are also on the World Health Organization’s Essential Medicines list. But SOF is extremely expensive. It costs US$ 84,000 for 3-month medication (US$ 1,000 per tablet). In Malaysia a patient paid RM387, 000 (approx. USD 86,770) for a 24-week course.

Gilead has filed many patent applications related to SOF in many countries, which prevents many people living with HCV access to more affordable medicines, as no other generic manufacturers can sell in those countries. These applications have been challenged in some countries (e.g. in India and in Europe). Some applications have also been rejected


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(e.g. in Egypt, India and China) as their patent offices did not consider SOF to be a real novel or innovative invention.

Unfortunately, Malaysia has granted several patents on SOF. This means that unless concrete steps are taken by the Malaysian government to address the patent barriers, patients in Malaysia will be denied access to cheaper generic versions of SOF.

We urgently request:

1. The Ministry of Health to take immediate steps to address intellectual property barriers including by using flexibilities such as compulsory license to make Sofosbuvir based treatment regimens available in Malaysia at an affordable price. Generic SOF is presently available for various Indian generic manufacturers for less than US$ 300 for a bottle of 28 pills.

2. The Malaysian Intellectual Property Office (MyIPO) must apply more rigorous standards in the examination of patent applications to prevent frivolous patents that promote patent “evergreening”. MyIPO needs to be aware that its decision whether or not to grant a patent has a major impact on people lives. It is simply unacceptable that MyIPO is granting patents on applications that are rejected in other countries.

3. The Malaysian authorities need to introduce administrative pre- and post-grant oppositions systems in the Malaysian Patent Act to enable more rigorous examination of patent application.


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APPENDIX 4

SAMPLE INFOGRAPHICS


21 Advocacy, Your Constitutional Right! The Basic Advocacy Toolkit

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Source: Chase Perfect. 1

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Source: MSF.2

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APPENDIX 5

SAMPLE T-SHIRT

Short sleeve round neck t-shirt

APPENDIX 6

SAMPLE FLYER

Advocacy, Your Constitutional Right! The Basic Advocacy Toolkit 25

Advocacy, Your Constitutional Right! The Basic Advocacy Toolkit 26

1. Chase Perfect of Coalition Plus.

2. Medicine San Frontieres. Available at: https://www.msfaccess.org/content/infographicsbig-pharmas-continued-attack-india-pharmacy-developing-world

9.0 REFERENCES

27Advocacy, Your Constitutional Right! The Basic Advocacy Toolkit

ALL IMAGES IN THIS DOCUMENT ARE THE COPYRIGHTED PROPERTY OF THEIR RESPECTIVE OWNERS AND MAY NOT BE USED WITHOUT EXPRESS PERMISSION FROM THE OWNER/PHOTOGRAPHER.


ADVOCACY,€¦ · Advocacy, Your Constitutional Right! The Basic Advocacy Toolkit 1 Acknowledgements. T he Basic Activist Toolkit: Advocacy, your constitutional right was develop

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