What a Difference VA Medical Care Has Made!
“Will my insurance cover it?” That’s a question I thankfully don’t have to ask when discussing various treatments with my care team at Veterans Affairs (VA). Its healthcare clinics have definitely gotten some bad press due to their care of our veterans, and I’ve been on the receiving end of some not-so-stellar care myself. But I’ve also had some amazing providers who’ve literally given me my life back.
When I was medically retired from the U.S. Army in July 2011, I had a disability rating and was enrolled in the VA. I was able to be seen and get treatment as soon as I arrived in Maine. But there was a lot to unravel, and unfortunately for me, I was one of the very few young female veterans using my benefits; I was 27 when I entered the “retiree” club.
Many of my symptoms and ailments were initially chalked up to post-traumatic stress disorder. It took years of me advocating for myself and continuing to be the squeaky wheel to build a care team within the VA that ended up being exactly what I needed.
A chief complaint often heard about the VA healthcare system is that they treat the symptoms rather than the cause. In the beginning of my journey, this was my experience as well. The healthcare providers usually mean well and want what is best for the veterans, but they’ve historically been overworked and understaffed.
Regardless of what my providers were treating, or how, I didn’t have to worry about how to pay for the medical equipment, medications, or services they recommended. I was able to receive a stair glide so I could have full access to our home in Maine; I’m still waiting for a contractor to do a site evaluation for our new home here in Wisconsin. I was provided a custom manual wheelchair for increased mobility and accessibility. And my medications are always provided to me at no cost.
For someone with myasthenia gravis (MG), the medication benefit has been a huge relief. MG treatments and medications are not cheap!
It’s important to have a care team that you trust when you have complex health issues. By asking questions, seeking referrals, and exhausting every possible avenue, I was able to have that.
When I began experiencing right-side eyelid drooping, called ptosis, I made an appointment with the VA ophthalmologist, who was the doctor who made the initial working diagnosis of my myasthenia gravis. Because of this provider, I was able to justify seeking an outside referral for a neurologist who specializes in MG. My primary care physician (PCP) and eye doctor supported this. I was able to use what’s called “community care” (CC) to see a specialist outside of the VA and have the VA still cover the expense.
Community care can happen for several reasons: There may be a lack of VA specialists; it may take more than 60 minutes to travel to a VA specialist; appointment wait times for a specialist may be greater than 28 days (or 20 days for a PCP); and/or it’s otherwise in the veteran’s best interest.
When my CC neurologist recommended intravenous immunoglobulin (IVIG) treatment, there were hoops and a little red tape to jump through to get it started. Once the orders were in and I had a VA neurologist established to push the orders through, I haven’t had to fight to get my infusions. My CC neurologist simply had to send the orders to the infusion clinic at the VA, and I had an appointment scheduled within a week. I don’t have to fight an insurance company to approve the medicines that keep me living my life. The same holds true for any other medications I need.
While getting ready to move to Wisconsin and establishing my new care team, I was provided a case manager to assist with the transition to make sure there was no interruption of services or care. This was critical since I get IVIG every three to four weeks now. After my move, I was only one week late in getting my infusion. I now have a VA neurologist who understands MG, so I don’t need to use community care.
Getting VA care has its own set of headaches, but it also has its own set of advantages. Not having to fight for the treatments and medications for MG is definitely a huge advantage that I am ever so thankful for.
Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
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Comments
Beverly Turner
I’ve had MG since 78. It’s been good until last year but now I get IVIG treatments every 2 weeks. THANK GOD FOR THE VA. THEY MEET ALL OF MY NEEDS.
mas sato
I have MG General diagnosed by at least 2 specialists and several other DRs. carefully treating me due to a very complex interaction of health issues. I have started IVIG with very little results about two months ago. I have a 6 month infusion of 4 hours this month already. I have appointment upcoming in early June for a status evaluation. I also have heart failure drug treatments, kidney and liver treatments. I have new problems of hernia and need a flex tube change after one full year of tube feedings 2 times per day (Jevity 1.5Cal. I have several other specialists : Asthma, Pulmonogist, and Primary Care . What should I be doing to go forward because I not getting any better at this point.
Randolph Rhode
I also go to the VA. I was in the Army 1972-1974. Three months before separation I started the double vision and had prisms added to my eyeglass prescription. I spent my life trying to solve the double vision problem until I was diagnosised and tested for MG in 2012. Luckily, the VA had the Army eye exams from 1974 and I was able to get disability a few years ago. My VA neurologist has limited experience, but right now I only need the "Desert Storm" pill. If it gets more serious I will try to get community care at Ohio State where they have 3 MG specialist.
Renee Mallory
I have generalized MG and wondered what disability rating individuals have received from the VA once you separated or retired from the military. I will be retiring and didn't know what I could or should expect.
Shawna Barnes
Hi Renee. MG is considered service connected if symptoms show within a year of discharge from service. The minimum rating is 30%. Please refer to https://www.govinfo.gov/content/pkg/CFR-2004-title38-vol1/pdf/CFR-2004-title38-vol1-sec4-124a.pdf for more information. It completely depends on who does your assessment. I am rated at 100% T&P SC for other issues. Many of the constellation of symptoms I have hold their own rating. So for me, it hasn't made sense for me to push for a new re-evaluation because it wouldn't change anything. The best advice I can give you is to talk to your care team, and continue to push for the care required to treat MG. Best of luck! - Shawna