Navigating the medical mayhem is part of living with chronic illness. Not only do you have to find a doctor who believes your pain and fatigue is not “all in your head”, but find a doctor who is willing to diagnose you properly and then treat you for those conditions without assuming you are a drug addict looking for pain medication or a hypochondriac. If you are lucky enough to find a doctor who believes and understands you, and knows you are doing your best and aren’t looking for a miracle cure but just more good days, it is a small miracle.
It took me many years to find a team of doctors that were able to diagnose and treat me for my long list of chronic conditions. And for a team of doctors that communicate with each other about my treatment goals and results. In addition, all these doctors were working all under the same hospital system, all in buildings and offices just minutes away from my home. I did not have to drive all around town, through nightmare Los Angeles traffic. My Rheumatologist in particular, has been wonderful to me. He didn’t make me go to every specialist for all my labs. He ran them for me with the tests he already ordered, so that I did not have to make multiple appointments with multiple specialists to get the same stuff done. If anything unusual showed up, then I would make an appointment with the appropriate specialist for follow up. It saved me money, time and energy – all of which are in limited supply for my body. He understood that I knew my own body the best, and so if I told him something was not working for me, he knew I was not making it up and would find another option. He did his best to give me more good days than bad. I was one of the lucky ones.
But now I will most likely have to say goodbye to all my specialists. My Medicare health plan is being cancelled at the end of the year. It was a supplemental PPO plan that allowed me to see all my doctors, even though I had to limit them this past year because the co-pays were so expensive. Something changed in the Medicare requirements for the state of California, that has resulted in the Medicare PPO plan options to be cancelled. It would be too expensive for the insurance companies to give that option to California Medicare recipients.
Health Care in the USA
People think that once you get approved for disability, everything is set for you and you are easy street cause you don’t work, get a disability check every month, and healthcare. Let me tell you that I would never wish my life on anyone. You can’t live off your disability or social security check; it isn’t enough money to pay all your bills and have a roof over your head. Most people on disability have to rely on their spouse or their family to survive and not be homeless. And the medical care under Medicare is not free. You still have to pay for it, and you don’t get all the care you need if you have a lot health problems. Your choices are more limited than ever under Medicare, unless you have the out of pocket funds to pay for the extra care you may need. And, the commercials for the Medicare Advantage plans that say “Choose Your Own Doctors” don’t tell you that you need to have a PPO option to do that. Or, you have to already have doctors that are on the HMO plans for it to work to your advantage. If you are married and your spouse still gets healthcare through their work, or if you are getting disability benefits from your former employer, it isn’t so bad because the Medicare ends up being your “back up” plan, covering any additional expenses not covered by your primary health insurance plan.
My Medicare coverage was survivable when I had my PPO option. All my doctors are specialists. And all my doctors are PPO doctors; they don’t take HMOs because of how screwed up that system is for them and all the additional hoops required to give their patients care. I understand why they don’t want to be in contract with HMO plans. HMO plans work best if you are healthy and don’t have lots of doctors and specialists to see. I gave up on HMO plans a long time ago. And, once all the chronic crap started, I knew my only option would be with a PPO plan.
But now that I no longer have a PPO option. I have had to spend the last couple of months trying to figure out what my options were. I could stay on the Original Medicare plan, pay that premium each month, and just know that I would have to be prepared to pay up to 30 percent of the costs for my medical care out of pocket. In addition, I would have to pay for a separate prescription plan premium. And, still have co-pays and other out of pocket expenses. I would not have much hospital or emergency coverage, and there would definitely be some major medical bills from any emergency or hospital visits. My doctors all take the Original Medicare plan, and I would be able to continue seeing them with this option.
Sounds like a solution, right? Not really. I have been going through my statement of benefits this past year just to try and figure out how much out of pocket costs I could be stuck with under this option. Just to visit my Rheumatologist for my trigger point shots would be over $120, not counting the costs of any lab work or tests that are ordered, or the out of pocket costs of my medications. This is on top of the monthly premiums for the basic Medicare coverage in the first place. I would not be able to afford getting my annual heart test, which is considered an outpatient surgical procedure, because I would end up with a bill of several thousands of dollars! So, yes, I could keep my doctors, but how much care could I afford to receive when my out of pocket expenses would be too much for my limited budget?
So the next option would be to consider a Medigap plan. It would help cover some of the medical care costs not covered by Original Medicare. Maybe 20 percent. It is not a Medicare Advantage plan and has no networks, so I could still see my current doctors. Well, sounds good until you know how much a Medigap plan costs. If you are under 65 years old, it can cost anywhere from $250-$350 a month! This is on top of the monthly premiums for the Original Medicare plan and the Prescription Plan. That means I would have to pay $550 per month just to get most of my medical care covered, and still have some bills on top of that for the 10 percent that isn’t covered.
HMO Help Desk
Next option? It has killed me to do this. I have been screaming and agonizing over this. But I had to start calling all the HMO Medicare Advantage plans. None of them had doctors at UCLA or USC listed, even as a facility for care. Only one had a new contract with Cedars-Sinai. The HMO plans had some specialists listed, but very few had pulmonary heart specialists which treats my heart condition. And the list of Rheumatologists were limited as well, so it would be a roll of the dice to find one that believes in fibromyagia and treats it. And it looks like I would end up driving all over town again to see my doctors, fighting the traffic and the pain of my screaming body after the drive and the wait in the waiting room.
I called and researched and talked to multiple representatives in the different Medicare HMO Advantage Plans. and it has been exhausting. I finally one plan that listed my doctor’s hospital but not my doctors. It did not make sense. Why list the hospital locations but not have any of the doctor names listed as well? I called them up and discovered that my doctor’s hospital is considered a specialty hospital in their plan. If I can find a primary physician to refer me to a specialist there, then it would be considered in network and covered by the plan. The representative explained that most doctors don’t want to refer out of their own network of doctors that they work with, so I may not have much chance to get a referral to my specialists. But at least it is a chance, however slim it may be.
So, after much heartbreak and agony, I signed up for the Medicare Advantage HMO plan. Starting over with doctors is overwhelming. Fighting for referrals and insane waits for appointments are in my future again. Not to mention the traffic to get there. I will have hospital and emergency coverage, and outpatient procedures are also covered once approved. With this HMO plan, my copays are reduced significantly. So, once I get all my doctors established again, it could be a good thing. But my Christmas wish is to find a good primary care physician who will work with me to see a few of my former specialists again.
I am still preparing to say goodbye to my two favorite specialists next month. I am already grieving the loss of my doctors, cause I know that things will still be harder under the HMO system to get my care. I would never wish my life or any of this insanity on anyone. Being disabled. Getting disability. Being on Medicare. It is not easy. It is an endless process of hoop jumping, paperwork, phone calls and headaches. Every day I am saying goodbye and grieving a loss as I live with my chronic illness and pain. This is another loss and change I will adapt to, but I don’t know how my body will survive it.
The next month will be spent researching doctors on the list. I will make a list of potential doctors to call in the new year. I hope my search for a primary care physician will be short and sweet. And that any new specialists I see will be a good match for me. Otherwise it could take years to find a good team of doctors again.
Still knitting monsters. Still doing random acts of kindness. Still hoping the universe will be kind to Yoshi with his cancer this holiday season. Still grateful for Miya and for my life with Tony. Just hoping I don’t get killed in this Medicare minefield and end up in HMO hell.
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