On the eve of the World Day for Rare Diseases, which is celebrated on the last day of February, a study carried out by the newspaper Correio Braziliense, commissioned by a coalition of patient associations and NGOs, reveals impressive data (in the worst sense) on the performance of the Legislative in the field of rare diseases.
The survey confirms widespread sentiment among representatives of people living with rare diseases, with whom we have spoken over many years.
One of the study’s most relevant findings was that over 20 years, only eight bills (PL) were approved (when considering the Chamber of Deputies and the Senate), and 159 are in progress. In two decades, the total number of projects supported by the two houses represents 0.3% of the PL of each legislative house.
Such figures could indicate the low effectiveness of coalitions of patient associations in promoting the “right to health” of people living with rare diseases in the Legislative. And he sends a message to patient associations looking for parliamentarians in retail who have yet to gain experience in social mobilization and political struggle worthy of the name.
Would this also jeopardize the advocacy practices of such associations? Would they be working correctly? Anyway, a puzzle for the pharmaceutical industry to solve, which usually sponsors such associations.
“The elephant in the room”: what does this funny expression mean?
“The elephant in the room” is an expression that was familiar (at least in my generation). As Mairo Vergara’s blog well defines, it is “a metaphor for a problem or risk that is obviously present, but nobody wants to discuss it, because it is more comfortable to do so.”
Other variables must be analyzed to explain the phenomenon, which we will do in due course. But one thing is sure: the low efficiency of parliamentary action in rare diseases. This should be repeated in other agendas, such as the environment.
But an additional element may be contributing to such disappointing results.
The existing rift between two coalitions of patient associations is linked to rare diseases. It is a public and notorious fact among those who militate in the countryside the existence of fratricidal wars.
Investigating why such bills do not come out of the drawer in a significant period (twenty years) is necessary. There is no need to blame the pandemic for this fact. It is obvious!
The elephant has been in the room for a long time. And it starts to stink.
It is known that around 150 of these organizations are under the umbrella of both. Other associations, numerous, have yet to choose to be associated with one or the other.
The debilitating “us against them” strategy encouraged by some involved in the issue makes those engaged in a fight that is not theirs pay the price. And be unable to realize how powerful they would be if they could be united for the exact cause.
We have an elephant in the room, and it’s time to address the issue. The bet on the conflict may be showing signs of exhaustion. The poor performance of the Legislature regarding rare diseases may have sounded the alarm.
Food for thought!