Patients of SLA expressed their deep discomfort after the announcement of Pedro Sanchez to allocate 40 million euros to promote cycling as an alternative means of transport, including 20 million specifically earmarked for the purchase of electric bikes. This decision has been greeted with indignation by those affected by the Amyotrophic lateral sclerosis (ALS), whereas, even though significant sums are being invested in other sectors, the government is not devoting the 38 million euros needed to finance your treatments and improve your quality of lifeFor these patients, this lack of support is a serious insult, since the disease progresses without the necessary care.
The frustration of those affected and their families is that it prioritizes less urgent needs over those of a group that struggles daily to surviveThey denounce that, while the government promotes mobility plans, they continue to wait for financial support for treatments that could improve their daily lives and slow the progression of a disease that condemns them to a life of progressive dependency.
The Amyotrophic Lateral Sclerosis (ALS) Act, a regulation designed to protect patients from the devastating neurodegenerative disease, is at the center of controversy due to a prolonged parliamentary deadlock. What began as a promising initiative approved by Parliament, thanks to the proposal of the Popular Party (PP), He found himself trapped in a labyrinth of amendments and debates that prevented him from making any definitive progress. PSOE and Sumarthrough new amendments, have once again paralyzed its approval -sine die-, generating frustration among the families concerned and the health sector.
The ALS Act was initially introduced as a non-law proposal by the Popular Party in the Congress of Deputies. This initiative aimed to establish a legal framework that would guarantee better care and resources for people suffering from ALS, a disease that affects more than 4,000 people in SpainThe proposal, which enjoyed broad social support and was promoted by patient associations, was approved in a historic vote in Parliament in 2022.
Main measures
- The creation of multidisciplinary units in public hospitals for the treatment of ALS.
- Rapid access to innovative treatments.
- Better financial benefits and support for family caregivers.
- Investments in research to find a cure.
- Its initial approval was greeted with hope, both by patients and their families who have been fighting for years for better care and a better quality of life.
PSOE and Sumar paralyze progress
Despite the initial success of the proposal, legislative development of the ALS law was blocked by an amendment process. The PSOE and Sumar, Two parties that have shown their commitment to public health have introduced a series of changes that they say aim to “improve” the text, but in practice they stopped their progressThese amendments include adjustments to the budget allocated to the standard and changes to the skills of the health system.
The main argument of the PSOE and Sumar was the need to review the economic viability of the measures. raised by the PP, as well as the incorporation of nuances to ensure that the autonomies can adequately manage the application of the law. However, the amendments have been perceived by critics and associations of those affected as a mechanism to delay approval, which has generated a growing sense of frustration among the families affected and in the organizations that have been lobbying for their adoption for some time.
The continuation of the blockade has generated a great mobilization of ALS patient associations. These organizations, such as the Luzón Foundation, have expressed their despair at the legislative delays. They argue that every day that passes without adequate legislation is a day lost for patients who urgently need access to specialized treatment and care.
The medical community has also criticized the situation. Neurology specialists and health professionals who treat patients with ALS have stressed that the delay in approving the standard has a negative impact on the care that can be provided. Multidisciplinary units, which are part of the bill, are essential to provide comprehensive treatment to patients, and their lack of implementation leaves many patients without adequate access to the care they need.
The drama of families
The blocking of the ALS law This is not just a political issue, but it has direct human consequences. Families caring for people with ALS have been calling for greater state involvement in patient support for years. The disease, which progresses rapidly and leaves patients without mobility, forces many families to shoulder enormous financial and emotional burdens, as current support systems are inadequate.
With each delay in the adoption of the law, Families are forced to continue to cope with lack of resources. Caring for ALS patients is costly and exhausting, and the care required is, in many cases, beyond the economic and physical capabilities of family members. Therefore, the approval of this regulation is considered an urgent matter, not only to improve the quality of life of patients, but also to ease the burden on their caregivers.
The future of ALS patients remains uncertain. With the current parliamentary blockade, Time is against patients. Although the PSOE and Sumar insist that the amendments aim to improve the text, this is a sterile argument. and ensure more effective implementation, social pressure for the standard to progress has increased considerably. The recent work stoppage has drawn criticism from the opposition and various associations, who accuse the ruling parties of putting political interests before the urgent needs of patients.
In this context, it is urgent to find a rapid solution to unblock the situation so that the ELA law can finally be approved and implemented. In the meantime, ALS patients and their families continue to waitwith the uncertainty of not knowing when the promised changes they so badly need will come.
