Getting Your ALS Health Care Team Together: Four Steps to Take
An ALS diagnosis is a lot to carry. A health care team that is aligned with your values and who you trust to advocate for you is vital to empowering you as you navigate ALS. Here are four steps to take as you identify who should be on your health care team.
- Identify your values. It’s extremely important to know which aspects of your health and well-being are important to you and what your goals for care are. Sharing this with your health care team reduces the risk of misunderstandings and unmet expectations, and ensures you are all working toward what matters most — your goals. Pro tip: Not sure how to get started on identifying your values? Connect with an ALS Support Specialist who can support you with this.
- Make a list of the ALS clinics you want to learn more about. If you can, we recommend exploring multiple clinics to find the one that meets your needs and aligns with your values. Some elements to keep top of mind: Do they have a multidisciplinary care team? Do they offer telehealth? Do they have ALS clinical trials? Do they respond to you with compassion and in a timely manner? Do they take your insurance? Are they close to where you live?
- Understand the financial implications. Before you go too far in exploring each clinic, check with your insurance provider on whether your preferred clinics are in-network and whether they’ll cover multiple medical opinions. Also, get a better understanding of what clinic visit co-pays may be. Keep in mind that there will be a lot of additional expenses including medications, equipment, possible medical procedures, etc. Asking about the financial implications early may help reduce the addition of unforeseen costs. Pro tip: Discussing finances can be overwhelming, especially when the expenses start to add up. Our ALS Support Specialists can help identify financial assistance.
- Prepare for your first call or visit. Send your health history, all relevant test results, and a list of medications you’re taking to the health care team ahead of your first call or meeting with them. Know what questions you want to ask so you can get the most out of your visit. Pro tip: Keeping track of the information from multiple providers can be challenging. Use Caregiving.com’s Care Binder to stay organized and ensure the important information is easy to find and access.
ALS can feel overwhelming and isolating. From this moment on, we are here for you — our ALS Support Specialists will be your fierce advocates, resource specialists, and listening partners. In addition to providing you with helpful information, access to resources, and emotional support, we will regularly check in to make sure your wellbeing and needs are taken care of. Connect with an ALS Support Specialist today online or over the phone at 866-942-6257 9am-5pm CST Monday to Friday.
You might find these helpful:
Expanded Access Programs in the US
This is a list of ALS clinical trials that currently offer expanded access in the US.
Right to Try Fact Sheet
This handout from the FDA provides a brief overview of how and whether you may be eligible to obtain a treatment through Right to Try.