Amyotrophic Lateral Sclerosis and the Need for Cultivating Advocacy Urgency
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MCHENRY, Dr. Kristen.
Amyotrophic Lateral Sclerosis and the Need for Cultivating Advocacy Urgency.
Medical Research Archives, [S.l.], v. 12, n. 11, nov. 2024.
ISSN 2375-1924.
Available at: <https://esmed.org/MRA/mra/article/view/6007>. Date accessed: 12 dec. 2024.
doi: https://doi.org/10.18103/mra.v12i11.6007.
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Research Articles
The Medical Research Archives grants authors the right to publish and reproduce the unrevised contribution in whole or in part at any time and in any form for any scholarly non-commercial purpose with the condition that all publications of the contribution include a full citation to the journal as published by the Medical Research Archives.
References
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https://www.als.org/blog/remembering-lou-gehrig#:~:text=Gehrig%20would%20live%20less%20than,streak%20of%20consecutive%20games%20played
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4. National Organization for Rare Disorders. Amyotrophic Lateral Sclerosis. 2023;
https://rarediseases.org/rare-diseases/amyotrophic-lateral-sclerosis/
5. Huynh, W, Sharplin, LE, Caga, J, Highton-Williams, E, & Kiernan, MC. Respiratory function and cognitive profile in amyotrophic lateral sclerosis. Eur J Neurol, 2020; 27(4), 685-691. DOI 10.1111/e ne.14130
6. Thakore NJ, Pioro EP. Laughter, crying, and sadness in ALS. J of Neuro, Neurosurg & Psych. 2017; 88: 825-831.
https://jnnp.bmj.com/content/88/10/825
7. Caballero-Eraso, C, Carrera-Cueva, C, de Benito Zorrero, E, et al. Prospective study to evaluate quality of life in amyotrophic lateral sclerosis. Sci Rep. 2023;13,12074. https://doi.org/10.1038/s41598-023-39147-w
8. Benatar, M, Turner, MR & Wuu, J. Defining pre-symptomatic amyotrophic lateral sclerosis. Amyotroph Lateral Scler Frontotemporal Degener. 2019; 20(5-6), 303–309. doi: 10.1080/21678421.20 19.1587634
9. ALS Association. Benefits of a Timely Diagnosis: A Forward-Looking Statement for General Neurologists. 2024; https://www.als.org/thinkals/benefits-timely-diagnosis
10. Richards, D, Morren, JA, & Pioro, EP. Time to diagnosis and factors affecting diagnostic delay in amyotrophic lateral sclerosis. J of Neuro Sci. 2020;417,117054. https://doi.org/10.1016/j.jns.2020.117054
11. National Library of Medicine. ALS Clinical Trials. https://www.clinicaltrials.gov/search?term=amyotrophic%20lateral%20sclerosis&viewType=Table
12. Roggenbuck, J, Eubank, BHF, Wright, J, Harms, MB, Kolb, SJ, & the ALS Genetic Testing and Counseling Guidelines Expert Panel. Evidence-based consensus guidelines for ALS genetic testing and counseling. Ann of Clin and Translat Neuro. 2023;1-18. https://doi.org/10.1002/acn3.51895
13. ALS Association. The Case for Coverage. 2024;https://www.als.org/sites/default/files/2024-06/ALSA%20Payer%20Toolkit%20%281%29.pdf
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https://www.als.org/navigating-als/resources/benefits-attending-multidisciplinary-clinic
16. Miller, RG, Jackson, CE, Kasarskis, EJ, England, JD, Forshew, D, Johnston, W, Kalra, S, Katz, JS, Mitsumoto, H, Rosenfield, J, Shoesmith, C, Strong, MJ, & Woolley, SC. Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis: Multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review). Neurology. 2009; 73(15): 1227-1233.
https://doi.org/10.1212/WNL.0b013e3181bc01a4
17. Hogden, A, Foley, G, Henderson, RD, James, N, & Aoun, SM. Amyotrophic lateral sclerosis: Improving care with a multidisciplinary approach. J of Multidiscipl HC. 2017;10, 205-215. DOI: 10.214 7/JMDH.S134992
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https://www.als.org/navigating-als/living-with-als/fda-approved-drugs
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https://cdmrp.health.mil/alsrp/pbks/ALSRP%20Summary%20Sheet_20Feb24.pdf
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21. National Institute of Neurological Disorders and Stroke. Focus on Amyotrophic Lateral Sclerosis. 2024;
https://www.ninds.nih.gov/current-research/focus-disorders/focus-amyotrophic-lateral-sclerosis
22. ALS Association. The ALS Ice Bucket Challenge: How it started.
https://www.als.org/ibc-how-it-started#:~:text=In%202014%2C%20Jeanette%20Senerchia's%20cousin,it%20turned%20into%20something%20extraordinary.%E2%80%9D
23. Understanding Your Rights Living with an ALS-Related Genetic Alteration. I am ALS. 2024; https://www.iamals.org/resources/understanding-your-rights-living-with-an-als-related-genetic-alteration/#:~:text=For%20employment%2C%20this%20means%20that,Information%20Discrimination%20Act%20(GINA).
24. S.578- ALS Disability Insurance Access Act of 2019. 116th Congress. 2020;
https://www.congress.gov/bill/116th-congress/senate-bill/578
25. H.R.3537- Accelerating Access to Critical Therapies for ALS Act. 117th Congress. 2021; https://www.congress.gov/bill/117th-congress/house-bill/3537
26. ALS Association. Fight for Genetic Testing Protection Act Moves Forward in Maryland. 2023; https://www.als.org/stories-news/fight-genetic-testing-protection-act-moves-forward-maryland
27. I am ALS. BENEFIT Act of 2023. 2024; https://www.iamals.org/benefit-act-of-2023/
28. S.1590- Justice for ALS Veterans Act of 2023. 118th Congress. 2023;
https://www.congress.gov/bill/118th-congress/senate-bill/1590/text#:~:text=Introduced%20in%20Senate%20(05%2F11%2F2023)&text=To%20amend%20title%2038%2C%20United,death%2C%20and%20for%20other%20purposes.
29. S.1644- Promising Pathway Act. 117th Congress. 2021;
https://www.congress.gov/bill/117th-congress/senate-bill/1644
30. H.R.3875- Expanded Telehealth Access Act. 118th Congress. 2023;
https://www.congress.gov/bill/118th-congress/house-bill/3875/related-bills
31. Congressional Budget Office. H.R.542, Elizabeth Dole Home Care Act. 2023;
https://www.cbo.gov/publication/59573
32. ALS Network. H.R.9233: The Bipartisan Healthy Brains Act. 2024;
https://alsnetwork.org/hr-9233-bipartisan-healthy-brains-act/#:~:text=The%20HEALTHY%20BRAINS%20Act%20aims,for%20Neurodegenerative%20Disease%20Environmental%20Research
33. I am ALS. EDUCATE 2024. https://www.iamals.org/educate-2024/
34. ALS Association. Support the ALS Better Care Act (H.R.5663/S.3258).
https://www.als.org/sites/default/files/2024-02/ALSbetterCareAct_OnePageFlyer_final.pdf
35. ALS Association. ALS Congressional Caucus. 2024; https://www.als.org/advocacy/als-caucus
36. National ALS Registry. Organizations that support ALS patients and caregivers. 2023; https://www.cdc.gov/als/OrganizationsthatSupportPALS.html
37. National Academies. Living with ALS: Consensus Study Report. 2024;
https://www.nationalacademies.org/our-work/amyotrophic-lateral-sclerosis-accelerating-treatments-and-improving-quality-of-life
2. ALS Association. Remembering Lou Gehrig. 2023;
https://www.als.org/blog/remembering-lou-gehrig#:~:text=Gehrig%20would%20live%20less%20than,streak%20of%20consecutive%20games%20played
3. McHenry, KL. Airway Clearance Strategies and Secretion Management in Amyotrophic Lateral Sclerosis. Respir Care. 2023;69(7):1-11. https://doi.org/10.4187/respcare.11215.
4. National Organization for Rare Disorders. Amyotrophic Lateral Sclerosis. 2023;
https://rarediseases.org/rare-diseases/amyotrophic-lateral-sclerosis/
5. Huynh, W, Sharplin, LE, Caga, J, Highton-Williams, E, & Kiernan, MC. Respiratory function and cognitive profile in amyotrophic lateral sclerosis. Eur J Neurol, 2020; 27(4), 685-691. DOI 10.1111/e ne.14130
6. Thakore NJ, Pioro EP. Laughter, crying, and sadness in ALS. J of Neuro, Neurosurg & Psych. 2017; 88: 825-831.
https://jnnp.bmj.com/content/88/10/825
7. Caballero-Eraso, C, Carrera-Cueva, C, de Benito Zorrero, E, et al. Prospective study to evaluate quality of life in amyotrophic lateral sclerosis. Sci Rep. 2023;13,12074. https://doi.org/10.1038/s41598-023-39147-w
8. Benatar, M, Turner, MR & Wuu, J. Defining pre-symptomatic amyotrophic lateral sclerosis. Amyotroph Lateral Scler Frontotemporal Degener. 2019; 20(5-6), 303–309. doi: 10.1080/21678421.20 19.1587634
9. ALS Association. Benefits of a Timely Diagnosis: A Forward-Looking Statement for General Neurologists. 2024; https://www.als.org/thinkals/benefits-timely-diagnosis
10. Richards, D, Morren, JA, & Pioro, EP. Time to diagnosis and factors affecting diagnostic delay in amyotrophic lateral sclerosis. J of Neuro Sci. 2020;417,117054. https://doi.org/10.1016/j.jns.2020.117054
11. National Library of Medicine. ALS Clinical Trials. https://www.clinicaltrials.gov/search?term=amyotrophic%20lateral%20sclerosis&viewType=Table
12. Roggenbuck, J, Eubank, BHF, Wright, J, Harms, MB, Kolb, SJ, & the ALS Genetic Testing and Counseling Guidelines Expert Panel. Evidence-based consensus guidelines for ALS genetic testing and counseling. Ann of Clin and Translat Neuro. 2023;1-18. https://doi.org/10.1002/acn3.51895
13. ALS Association. The Case for Coverage. 2024;https://www.als.org/sites/default/files/2024-06/ALSA%20Payer%20Toolkit%20%281%29.pdf
14. Social Security Administration. DI 11036.001 Amyotrophic Lateral Sclerosis (ALS) – Medicare Waiting Period Waived – Field Office. Program Operations Manual System. 2022; https://secure.ssa.gov/poms.nsf/lnx/0411036001
15. ALS Association. Benefits of attending a multidisciplinary clinic. 2023;
https://www.als.org/navigating-als/resources/benefits-attending-multidisciplinary-clinic
16. Miller, RG, Jackson, CE, Kasarskis, EJ, England, JD, Forshew, D, Johnston, W, Kalra, S, Katz, JS, Mitsumoto, H, Rosenfield, J, Shoesmith, C, Strong, MJ, & Woolley, SC. Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis: Multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review). Neurology. 2009; 73(15): 1227-1233.
https://doi.org/10.1212/WNL.0b013e3181bc01a4
17. Hogden, A, Foley, G, Henderson, RD, James, N, & Aoun, SM. Amyotrophic lateral sclerosis: Improving care with a multidisciplinary approach. J of Multidiscipl HC. 2017;10, 205-215. DOI: 10.214 7/JMDH.S134992
18. ALS Association. FDA-approved drugs for treating ALS. 2024;
https://www.als.org/navigating-als/living-with-als/fda-approved-drugs
19. Congressionally Directed Medical Research Programs. Amyotrophic lateral sclerosis research program. 2024;
https://cdmrp.health.mil/alsrp/pbks/ALSRP%20Summary%20Sheet_20Feb24.pdf
20. Centers for Disease Control and Prevention. About the national ALS biorepository. 2024; https://www.cdc.gov/als/ALSNationalBiorepository.html
21. National Institute of Neurological Disorders and Stroke. Focus on Amyotrophic Lateral Sclerosis. 2024;
https://www.ninds.nih.gov/current-research/focus-disorders/focus-amyotrophic-lateral-sclerosis
22. ALS Association. The ALS Ice Bucket Challenge: How it started.
https://www.als.org/ibc-how-it-started#:~:text=In%202014%2C%20Jeanette%20Senerchia's%20cousin,it%20turned%20into%20something%20extraordinary.%E2%80%9D
23. Understanding Your Rights Living with an ALS-Related Genetic Alteration. I am ALS. 2024; https://www.iamals.org/resources/understanding-your-rights-living-with-an-als-related-genetic-alteration/#:~:text=For%20employment%2C%20this%20means%20that,Information%20Discrimination%20Act%20(GINA).
24. S.578- ALS Disability Insurance Access Act of 2019. 116th Congress. 2020;
https://www.congress.gov/bill/116th-congress/senate-bill/578
25. H.R.3537- Accelerating Access to Critical Therapies for ALS Act. 117th Congress. 2021; https://www.congress.gov/bill/117th-congress/house-bill/3537
26. ALS Association. Fight for Genetic Testing Protection Act Moves Forward in Maryland. 2023; https://www.als.org/stories-news/fight-genetic-testing-protection-act-moves-forward-maryland
27. I am ALS. BENEFIT Act of 2023. 2024; https://www.iamals.org/benefit-act-of-2023/
28. S.1590- Justice for ALS Veterans Act of 2023. 118th Congress. 2023;
https://www.congress.gov/bill/118th-congress/senate-bill/1590/text#:~:text=Introduced%20in%20Senate%20(05%2F11%2F2023)&text=To%20amend%20title%2038%2C%20United,death%2C%20and%20for%20other%20purposes.
29. S.1644- Promising Pathway Act. 117th Congress. 2021;
https://www.congress.gov/bill/117th-congress/senate-bill/1644
30. H.R.3875- Expanded Telehealth Access Act. 118th Congress. 2023;
https://www.congress.gov/bill/118th-congress/house-bill/3875/related-bills
31. Congressional Budget Office. H.R.542, Elizabeth Dole Home Care Act. 2023;
https://www.cbo.gov/publication/59573
32. ALS Network. H.R.9233: The Bipartisan Healthy Brains Act. 2024;
https://alsnetwork.org/hr-9233-bipartisan-healthy-brains-act/#:~:text=The%20HEALTHY%20BRAINS%20Act%20aims,for%20Neurodegenerative%20Disease%20Environmental%20Research
33. I am ALS. EDUCATE 2024. https://www.iamals.org/educate-2024/
34. ALS Association. Support the ALS Better Care Act (H.R.5663/S.3258).
https://www.als.org/sites/default/files/2024-02/ALSbetterCareAct_OnePageFlyer_final.pdf
35. ALS Association. ALS Congressional Caucus. 2024; https://www.als.org/advocacy/als-caucus
36. National ALS Registry. Organizations that support ALS patients and caregivers. 2023; https://www.cdc.gov/als/OrganizationsthatSupportPALS.html
37. National Academies. Living with ALS: Consensus Study Report. 2024;
https://www.nationalacademies.org/our-work/amyotrophic-lateral-sclerosis-accelerating-treatments-and-improving-quality-of-life