27 March 2023
Monica Chapman speaks at the National Assembly in the third debate on the day the bill was passed. The President of the Legislative Branch appears behind her, as well as the shield of the Legislative Branch.
Who are you and how long have you been working with Psoriasis Foundation of Panama (FPP)?
My name is Monica Chapman. I am the founder of the Panama Psoriasis Foundation. I have been working for the people with psoriatic disease since 2004 and a member of IFPA since 2005.
What is your motivation for working at a psoriatic disease patient association?
The psoriatic disease has impacted my family in many ways, and it have been present in the family in three generations, now. We have the means to have access to treatments and still, we have suffer a great deal because of the disease; therefore, my husband and I decided to help other people that does not have the means to access adequate treatments.
When did FPP start work towards Bill 603?
Since the beginning. For many years we tried with different approaches. In 2005, we gave talks to legislators to raise awareness about the disease and that year a Presidential Decree was issue to declare October 29 as National Psoriasis Day. For years, we made several attempts with different legislators that did not materialize. We were lucky enough to meet a deputy who had a friend with psoriasis and she decided to submit this bill to the Committee of Health in 2021, that finally became law on August of 2022.
Why did you decide to pursue a law?
We insisted for years that it was necessary to have a law for psoriasis because the Public Health Sector in Panama has little knowledge of the disease; therefore, psoriasis was not even on the disease chart.
IFPA chose Panama´s Ministry of Health of 2011, to take the leadership in requesting the World Health Organization to recognize psoriasis as a serious, chronic, noncommunicable, autoimmune disease and to become a partner of the World Psoriasis Day. Then, in Panama the Government changed, and the next one did nothing regarding the disease.
In Panama, the Public Heath Institutions’ basic medication chart does not include any biologic developed for psoriasis. They use as of today, only Enbrel and Humira to treat psoriasis. The majority of the patients don´t respond two options anymore.
Who did you work with to make the bill happen? How did you contact them?
We have been working for 17 years for this to happen. The Panama Psoriasis Foundation has been doing advocacy for 18 years now, and it has paid off. A deputy named Itzi Atencio knew about the foundation and called me to her office to start working with a two-page bill to get it pass in the National Assembly something not too complicated.
Take me through the story of getting to Bill 603? What were the first steps? How did the initiative evolve?
Definitively, having someone inside the Assembly with a close friend suffering from this disease made the difference. Deputy Atencio had a team that wrote the draft of the bill, and we suggested some changes. Then, it was up to the different legislators. I received some calls from other deputies that wanted my opinion and I met with them to make sure they will support the bill. I also received calls from the President of the Assembly. I remember one day, being at the Assembly and the deputy told the Ministry of Health, and the Ministry of Economy that were there for a meeting that I must talk to them. I knew the Ministry of Economy and I met that day the Ministry of Health; and I had the opportunity to share awareness with both.
What challenges did you face in advocating for Bill 603? How did you overcome them?
Perhaps surprisingly, we faced none. The bill passed with no opposing votes in any of the three different debates. I spoke in the first debate. I did not participate in the second debate, because it happened at the very last minute and it was the last day of the present President´s period. In the third debate, you are not supposed to speak, but I was so excited that I started crying. The President of the Assembly ask me to talk, and they took a lot of pictures and video, and I was all over the social media, tv and newspaper. It was amazing how fast everything happened.
What exactly does Law 322 state? What benefit does it bring for people with psoriatic disease?
Bill 603 was approved by the National Assembly and then went to the Executive Branch. After a couple of months the President sanctioned the bill 603 and became Law 322 on August 30 of 2022.
The Law Declares Of National Interest The Medical Attention, Research And Professional Training In The Early Detection, Diagnosis And Integral Treatment Of Psoriasis.
Have you seen any changes since the law was passed? What changes?
Not yet, because we are still waiting for it to be regulated. But, I am in constant conversation with the deputy that promote the law to make sure we would be able to participate in the regulation of the law. In the meantime, we are working on a Roadmap for the implementation of the law.
What do you expect for the future with Law 322?
It is going to be an ongoing work because we are in a pre-election year. Therefore, we have to work hard in order to make sure that the Minister of Health complies with the law, as well as the one to come. The main challenge will be to make sure that the law gets implemented.
What do you wish you had known before you started working towards Law 322?
At this time, I have no regrets at all. Maybe, that it took me 17 years to find someone within the National Assembly who had a loved one with psoriasis.
What advice can you give to other IFPA members who want to achieve the same goal?
To find within the decision makers, someone that understand what living with psoriasis means.
Where can I find out more about Law 603?
You can search for news articles about the law! It is better to search in Spanish for “Ley 322 del 30 de Agosto de 2022”.
Scan to watch the speech at the National Assembly (in Spanish)