Please advocate for the ALS Disability Insurance Access Act

The ALS Disability Insurance Access Act (H.R. 1407) is a bill that is being proposed to congress asking them to remove the five-month waiting period that ALS patients must wait to receive their Social Security Disability Insurance (SSDI). ALS patients currently start receiving their SSDI benefits five months after diagnosis of ALS. However, they need it immediately after diagnosis as so many who are diagnosed with ALS do not live long enough to receive the benefits available to them five months after diagnosis. Many people with ALS are diagnosed long after the disease has been affecting their bodies, and therefore they may not live long after being officially diagnosed. This is the reasoning behind the ALS Disability Insurance Act; to allow more people diagnosed with ALS to receive the benefits from their disability insurance when they really need it. 

ALS is a very gruesome disease that slowly takes over the body by taking away bodily control from a person, such as the ability to move one’s arms, ability to speak, and eventually the ability for one to breath. ALS is such a complicated disease to diagnose that it is most often the case that those who do get diagnosed are already a year or two, at minimum, into their journey with ALS. This is a large reason why so many people die with in a few weeks or months of their diagnosis, often times before five months have elapsed since their diagnosis. In general, most ALS patients only live between two and five years after getting their official diagnosis, but many do not even make it this long. This fact makes the need for support of this ALS Disability Insurance Act even more crucial. 

Victims of ALS and their families need lots of support medically, physically, and emotionally in order to deal with this disease in the time that the patient has left. In order for these patients and their families to afford and/or receive these supports, they must be able to receive their SSDI benefits from the time that they are diagnosed. As a result of the urgency and importance of this bill, I am asking you, the reader, to please pledge your support for this bill and to ask your friends and family to pledge their support for it. You and your family and friends can show your support for this bill by informing others about it and/or writing to your congressional representatives and senators asking them to vote for it. This may seem like a simple task, however, if we work together as a state and a country to raise support for this, then it will become something significant. 

The CONNECT for Health Act

The CONNECT for Health Act stands for the Creating Opportunities Now for Necessary and Effective Care Technologies for Health Act. This is an Act that is being submitted by the ALS Association (a group advocating for care and treatment for persons facing the progressive neurodegenerative disease amyotrophic lateral sclerosis). The main point of the bill is to ensure  that patients with ALS gain access to telemedicine and Telehealth regardless of their location. Patients who have access to telemedicine and Telehealth tend to be in rural areas, where access to health care for their needs is not within close proximity. This bill is pushing for the expansion of access so that patients who may live in the city or closer to their health services, but cannot physically get to them, can still get the health care and doctors appointments that they need. The ALS Association has agreed to, “work closely with stakeholders across the health care and technology ecosystem to expand a legal and regulatory environment where providers are permitted to deliver safe, high quality care using Telehealth and telemedicine regardless of care delivery location or technological method” (ALS Association). This would ensure that the process of using Telehealth and telemedicine for serving ALS patients would go as smoothly as possible on both ends of the line, and would ensure that patients are still getting the best care possible without the stress of having to leave their home. 

Those in favor of this act support it because it would allow for a greater number of patients with ALS to get access to the much needed health care that they may otherwise not be able to access. Doing appointments online through this method increases the chances that more people will be able to make their appointment, as they do not have to leave their homes and travel to meet with their doctor. Another reason people support this act is because if patients are in a wheelchair or need lots of medical assistance to function, then they may not be able to travel or may feel too insecure to travel to the doctor’s office. Having their appointments available through an online format where they can talk to their doctor from the comfort of their home can have a significant positive impact on their self-esteem and reduce stress that comes along with trying to travel. Many in congress favor this bill and agree it would improve health access to many patients.

Currently there is no opposition to passing the act. All comments made on this act have been in favor of it. However, possible oppositions to this act may include that it does not allow for as much of a personal connection between patients and health care providers. By doing appointments online, and not in person, there is a limitation to how much of a personal relationship can be built. Another potential reason one might oppose this Act is because of the dependency on the internet that it requires. In order for patients to meet with providers through Telehealth and remote means, each person must have access to the internet and be able to keep a strong connection during the entire appointment. If the internet is down or not strong enough for one or more participants at the time of an appointment, then the patient may not be able to meet with their health care provider for their appointment. These are only possible oppositions to the bill and are not oppositions made my congress.

References

http://www.alsa.org/advocacy/Public-Policy-Priorities.html?

https://www.congress.gov/bill/116th-congress/senate-bill/2741