Accelerating Access to Critical Therapies Policy

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Table of Contents

Summary of the Issue
Background of the Issue
Policy Options
Stakeholder Perspectives
References

This report focuses on the federal bill H.R.3537, also known as the Accelerating Access to Critical Therapies for ALS Act. It is a recent addition to the legislative space of the United States that was enacted on December 23, 2021 (H.R.3537 – Accelerating Access to Critical Therapies for ALS Act, 2021). Its primary purpose is to establish government-funded grant programs that help healthcare professionals address the spread of neurodegenerative diseases. It is suggested that the system’s enhanced financial capabilities will contribute significantly to rigorous research into the problem and the development of effective treatment procedures. The allocation of grants is to be managed by the U.S. Department of Health and Human Services, covering the costs of research and development endured by both private and public entities. The Act provides a governmental control mechanism in that the responsible organizations must report all actions, expenditures, and progress to corresponding federal bodies. It is expected that the enactment of this bill will help the United States advance in its struggle against these rare neurodegenerative conditions.

Summary of the Issue

The Accelerating Access to Critical Therapies for ALS Act aims to improve and prolong the lives of people with neurodegenerative diseases, especially amyotrophic lateral sclerosis, or Lou Gehrig’s disease. It is a gradually progressing condition that affects the patient’s central nervous system. The damage is done to the motor neurons, immobilizing the individual as the disease develops within the body (Kiernan et al., 2021). The onset and development patterns of ALS may vary, but some core tendencies are found in the vast majority of all cases. It usually begins with some minor twitching and weakness in the limbs, as well as developing speech impediments. As the disease spreads, these muscle-related symptoms become more obvious, beginning to affect a person’s ability to perform daily tasks. In later stages, the effect of ALS extends to the muscles that control such vital functions as eating, moving, speaking, and even breathing. Therefore, its impact on the quality of life is considerable, as it encompasses most aspects of living. Furthermore, the disease is fatal, and no effective cure currently exists for the ALS.

Background of the Issue

In light of the severity of the matter at hand, the healthcare community has been working on effective solutions that would improve the patient’s quality of life and potentially extend it as much as possible. However, such endeavors inevitably face budgeting issues, as neurodegenerative diseases are inherently complex in terms of their origins and development on a genetic level (Kim et al., 2020). Furthermore, they largely remain uncharted territory for researchers, which implies that considerable funds are required for further examination of the problem. This issue is highlighted by van Eijk et al. (2020), who state that collaborative efforts of the healthcare community are needed to address ALS in all its complexity. In addition, in the absence of an effective cure, more efforts are needed to provide the required care for patients with this condition. This area is also reliant on innovative methods that are usually costly to research and develop (Aoun et al., 2018). Therefore, federal initiatives to support promising research of ALS are a timely measure that will contribute to the well-being of the nation.

Policy Options

In its current form, the Accelerating Access to Critical Therapies for ALS Act functions on a grant basis. In other words, researchers have an opportunity to apply for federal funds by justifying the rationale for their projects and their prospects for the community. An alternative approach to the solution may exist in the form of direct and comprehensive financing of all the organizations related to ALS treatment. In this case, there would be no competition for the funds, and all researchers, doctors, and nurses would feel the effect of the initiative. Nevertheless, the federal government’s resources are finite, meaning they should be allocated wisely. While any progress in the treatment of ALS is valuable, the government cannot afford to spend money on projects with little potential. Moreover, comprehensive funding would create more opportunities for financial fraud, further damaging the economy. With the current system in place, researchers treat these funds as investments, working hard toward generating returns in the form of efficient ALS treatment models. Apparently, the federal government understood the situation, which is why alternative bills were not presented for consideration.

Stakeholder Perspectives

In light of the novelty of the bill, little publicity has been generated around it. Therefore, it is only possible to speculate regarding the stakeholders’ perspectives on it. From the patients’ perspective, any federal efforts toward eradicating their disease are welcome. There may be doubts regarding the viability of the grant paradigm chosen, but it appears feasible in the long term. The healthcare system is also likely to respond to the Accelerating Access to Critical Therapies for ALS Act positively. For experts and researchers, this bill creates more opportunities to engage in costly but promising research into neurodegenerative diseases. As for the government itself, more time is needed to evaluate the practical application of the new piece of legislation. For now, the key recommendation is to promote the opportunities of this Act among the stakeholders, encouraging them to engage in mutually beneficial, collaborative efforts for the benefit of humanity.

References

Aoun, S. M., Hodgen, A., & Rho, L. K. (2018). Until there is a cure, there is care A person-centered approach to supporting the well-being of people with motor neuron disease and their family carers. European Journal for Person-Centered Healthcare, 6(2). Web.

H.R.3537 – Accelerating Access to Critical Therapies for ALS Act. (2021). Congress. Web.

Kiernan, M. C., Vucic, S., Talbot, K., McDermott, C. J., Hardiman, O., Shefner, J. M., A., Al-Chalabi, W., Huynh, M., Cudkowicz, P., Talman, L. H., Van den Berg, T., Dharmadasa, P., Wicks, C., Reilly & Turner, M. R. (2021). Improving clinical trial outcomes in amyotrophic lateral sclerosis.Nature Reviews Neurology, 17(2), 104-118. Web.

Kim, G., Gautier, O., Tassoni-Tsuchida, E., Ma, X. R., & Gitler, A. D. (2020). ALS genetics: gains, losses, and implications for future therapies. Neuron, 108(5), 822-842. Web.

Van Eijk, R. P. A., Kliest, T., McDermott, C. J., Roes, K. C. B., van Damme, P., Chio, A., Weber, M., Ingre, C., Corcia, P., Povedano, M., Reviers, E., van Es, M. A., Al-Chalabi, A., Hardiman, O., & van den Berg, L. H. (2020). TRICALS: Creating a highway toward a cure.Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 21(7-8), 496-501. Web.

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Accelerating Access to Critical Therapies Policy

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