After a brief break I am back to share my stories, worries, concerns, joys, and all that falls in between. I believe there is joy in all we go through. It is simply the intricacy of any situation that gives us the window to the beauty. I have been through a few twists and turns since we last met.
For several months, back into late 2014, I have been having these strange, painful, sudden then lingering cramps. Cramps are the only way I can describe them for lack of a better term. In mid March one of these sudden pains came on and dropped me to my knees. A pain that became suddenly debilitating, even to the point that I could not take a breath or call for help. After staying frozen long enough for the pain to settle down a bit, I called my doctor. The only way I can describe it is imagine you have eaten a super sized meal from McDonald's then took off at a full on sprint. A side cramp to knock a giant out would hit you like a brick. Now multiply that and imagine it remaining constant, but with sudden jolts sporadically. I went back and forth for a week or two with my doctor until he heard enough. He told me to get down to the hospital for admittance. Thankfully my brother and sister-in-law dropped everything to help with our son. My husband's family was ironically on their way to visit. It became a tag team situation until most of his family left, leaving behind my mother-in-law with us as long as we needed her. That was a true blessing.
Once admitted I was put on a clear liquid diet. This would be a major downer for anyone. One of the worst downers for me. I have been well over anything lemon/lime or jiggly for years now. Being a diabetic made it more challenging, as my doctor had noted it in my diet (explanation to follow). The next morning they quickly did an EGD/ endoscopy. I was still ordered to stay on the clear liquid diet thereafter. I tend to vomit often after tests or severe pain and this scope proved no different. The rest of the day was not worth ingesting a thing. IVs are certainly a life saver.
Over the next few days I was run through a battery of tests. So when I woke on that second day I read my diet allowance through and through, time and time again. Italian ice. Ok, that sounds pretty safe. I love the frozen lemonade or cherry ice you can buy almost anywhere during summer months. I called down and ordered a cherry Italian ice. I was quickly swept away for a quick scan. Upon my arrival I saw this melted red substance, somewhat jelly-like, with a strange white cream (if that's what I want to call it) which was obviously not clear yet allowed on this diet. It was not something I thought I'd like no matter what diet I needed. I decided to call down for some ginger ale considering the vomiting was only tapering off. "You are not allowed ginger ale."
"But it shows it IS allowed on the clear liquids options..."
"Well, you are diabetic and have already hit your carb limit until lunch."
Carb limit?! What exactly is my limit? I had no idea. The person on the other end and I played our little game for another few minutes. Me explaining I am Type I and have an insulin pump as well as being on the clear liquids reiterating my limited options. Him explaining I did have the option of a broth, which is also something I despise, or wait 4 hours before ordering. At this point I ended the conversation defeated. Then a light bulb. I asked my husband to run to a gas station and buy me some darn ginger ale for goodness sake. The nurse happened to be in my room at the time and said she would sneak down to the cafeteria and grab something she thought I could stomach. Within minutes I had some lemon/lime soda (oh yuck) with a small cup of orange sherbet. I asked for a cup. I decided to put the sherbet in the cup and pour the soda over it. Instant party punch. My husband then comes in with a six pack of ginger ale with a surprised look on his face because there I was with the lemon/lime soda he saw. When I explained, he was delighted at my starving, innovative ways to find a happy place. I was in such excitement when I got bumped up to a full liquid diet the next day, especially since we now knew how to work around the ridiculous carb limit.
We knew how to work our way through a lot of this due to previous hospital stays with similar restrictions. I slowly worked my way up to smoothies. With a little more substance in me I was overjoyed by getting the chance to roam the hospital when I got restless....every few minutes in my case. The pain had lessened up enough, though I was doped up pretty well by this time. I certainly could tell when my re-up was necessary. Throughout it all my doctor came by once or twice a day to check my progress or decline as well as give any updates to my family and me. Much of the stay blends together as you may imagine.
Two or three days in he came in with some information that set the stage. The endoscopy showed irritation around the leads of my gastric stimulator. There is a clear print out of risks with this stimulator, as with any other medical need, where it lays out the possibility of migration of leads, perforation of the stomach, and rejection. At that point in time, all they could definitively say was there was irritation and inflammation. He needed to communicate with Medtronic, the manufacturer, and was going to try to touch base with a national expert he knew well. The manufacturer asked for my records while communication with the colleague was difficult. Days passed with little to no new information or plan of action. It was discussed that the leads and/or device needed to be replaced. My doctor was tossing the idea around about different casing around the leads and different materials to hold them in place hoping to prevent the irritation. By that time he had determined it was rejection of some sort.
Along the way he asked if I thought I would be able to handle food. My eyes lit up, but my belly second guessed me. I opted to try applesauce with little confidence. My lack of confidence turned out to be a true finding. Vomiting ensued so I moved at a snail's pace. At day six I tried some dry cereal that soon turned in to shards of glass going slowly through my digestive system only increasing the pain I was experiencing. I gladly went two steps back and crawled even slower to solid food. By day eight, although I love my shakes and smoothies, I was ready to try again. This time I ordered scrambled eggs, a staple usually, and some potatoes, not hash browns. I made it through a few good bites. I was pleased to show my doctor when he stopped by. He wanted to see a little more before he would discharge me. At this stage of the game he had come to a decision to get me stable, discharging me, and continuing to search for a solid answer with me as an out patient. A couple of days later, I was up to half a plate of eggs with potatoes and showing clear signs of holding down fluids. He finally discharged me. He wanted to turn up the device a bit in hopes it would allow me to eat just a bit more. He also wanted to check back in two weeks for a follow-up with possibly another bump up. There were plenty of loose ends to tie up, but some strengthening and recovering time at home would be very beneficial.
I have seen him several times since. We have been left with the same lack of knowledge from others as well as the manufacturer. In another patient a replacement of leads or the device would be a no brainer, but my situation is different. What if my body just rejects what they do? What if my body is not strong enough to withstand another really major operation? How dangerous is this all? Neither my doctor nor I had any clue what our next step should be. He wanted some firm answers or strong opinions from others before he jumped the gun. In the meantime, he wanted to compile as much information as possible to present to someone or to show him light through the open door.
Many of these tests and scans were frightening, none painful in lieu of the pain we are trying to mend.
The last scan I had was a Gilliam scan, named after the man who discovered it. This is a three day nuclear medical test. The patient is injected with radioactive tracers. A special camera takes pictures from several angles while the patient lies still, usually on their backs, for 30 minutes to an hour. For me, that is when pain is at its most high. Flat on my back. On the third day a radiologist reads them and if something is seen at that time they will decide if more is needed. That extra imaging is an additional hour long scan. Lo and behold, I needed the additional time. According to the hospital staff my doctor would have the results within two days. He then would contact me with said results. Not my doctor. He is absolutely phenomenal, but he takes his time combing through everything before he says or does a thing. Admirable in this rush-and-go society.
Yesterday was my most recent appointment since the Gilliam scan. I am always a nervous wreck before appointments, no matter the health need, especially with my gastroenterologist. Add in the hectic freeway driving and navigating through Dallas equals an adventure in Laurentown. I was discouraged from the get-go with the simple number on the scale. I remind myself of my efforts in those moments. The doctor came in shortly after. Our assumptions proved true. The scan showed significant inflammation and irritation around the leads. The solution to this problem, you might ask. Remove the device. He decided replacing the leads would not help because there is no other casing. If my body is rejecting the casing, it would be wasted effort. The only solution is to remove the device. He then said we could leave it in if I could bare it until the battery dies. He and I went through a maze of, what we thought was, logic. I asked if there was any immediate danger such as additional damage being caused. He said there was not. I asked if it is affecting my small or large intestines and again he said it isn't. I asked how long the battery is estimated to last considering I am coming up on my second birthday/anniversary. Based on my settings his original estimate was three or four years back when I got it so that encouraged me. He said normally they simply replace the battery when it dies, but what he could do is replace the entire device and see where that leaves us. All the worries of keeping it in were somewhat hashed out. Ultimately, the decision is my own.
I have gone through this same scenario in my head for some time now. I have often told relatives and friends that I don't know what's worse, this pain or the pain I experienced before I had the stimulator. Now, that is exactly what I face. Here are my thoughts with some reliable opinions of others. With the device still in I am feeling pain, constant with sporadic jolts. Without the device I was constantly distended only growing as the day went on. That caused pain that increased throughout the day leaving me with a heating pad on my abdomen every night. With the stimulator in I am able to enjoy some "normal" food without intense fear. Without, I never knew when I could handle anything. With the stimulator vomiting and others are at a minimum. Without the stimulator it was daily and sometimes multiple times a day. With or without the stimulator I can hardly wear anything but elastic clothing. Without the stimulator I would have more canvas for my insulin pump and continuous glucose sensor. I hardly weigh a thing, but who knows if or how much that number will drop if the stimulator is removed. I was also reminded of how much more isolated I was before I had the stimulator. I would sleep a lot usually ending my day around 6:00p purely out of lack of energy and strength. I was also candidly reminded how close I was to death before I had the stimulator. In writing this post that statement has come to the forefront of my mind because it is a reminder that I celebrate the implant date by calling it my birthday. It was a second chance at life that day. I was blessed to have the option.
As I tie up my post for now, I leave you with the question. What would you do faced with a decision so serious, but choosing the lesser of two evils? Do not get me wrong, everyone has their cross to bare. I am simply asking how you would come to a decision. Would it take an instant to make a final decision? Or would it take some intense thought and needle searching for answers?
I will not lie and say I am ready to make a choice. I can openly say this is weighing heavy on me. The difficult part is finding an objective view because the pain is indescribable no matter the choice. The uncertainty and isolation are the same no matter the choice. I have love, support, a son who is a tornado of joy, a hard working husband, a nice place to call home, and more. I get out and interact, just not as much as my counterparts. I go on long walks. I read good books. I have so much and yet somehow the hardest decision clouds all of the amazing gifts.
Today I choose to hang in there. I choose to manage my symptoms as they stand. My doctor said my physical activity and life should not be an issue. He said to do what I can handle. So I choose to listen closely to the pain and work around it. Tomorrow, next week, next month I may change my mind. I may decide I can't take it anymore. I am at peace knowing what it is, but I am war between emotions and clear thoughts. And you yourself are probably reading this with a major decision in your life. Maybe we should just stick to the moment to see where it takes us.
As I said to my doc as I was leaving his office, "trust your gut" no pun intended....but it sure is funny if it was intentional.
Thursday, July 23, 2015
Wednesday, February 25, 2015
The Gap
I recently was hit by a crash course on the infamous 'donut hole' we all hear about in relation to Medicare. Being in the situation I am in, candidly I am disabled and only have Medicare, I am susceptible to this unfortunate guideline. For years living in New Mexico I was covered under Extra Help. I never knew exactly what that was, but I had little to no costs for my prescription drugs. Moving to Texas in 2013 obviously changed many things.
When we first moved to Texas things seemed to be running smoothly. I updated my contact information and lost no time receiving my benefits. I needed to enroll in a new Part D Prescription plan because they vary state to state. That was a bit confusing but with a lot of questions and tenacity I figured it out. Because we had moved here just before my major surgery and my husband stayed home to care for me, I qualified for Medicaid in Texas. Why not take advantage of all the help you can get if you are doing your best to help yourself? I did not understand that it was a short-term qualification due to the fact I had no idea how they determine eligibility.
Every year Medicaid reviews all cases to determine requalification. They send out a notice with your information on it, ask if anything has changed, require a signature, and give you an easy prepaid envelope to send it all back. Neat and tidy. Well, not so neat. Thinking nothing had changed because my husband has worked the same job for seven years and I have received the same check for the last several years, I was shocked when I received a notice of loss of coverage beginning August 1, 2014. After running in circles trying to figure this determination out I was finally told that I had only qualified due to my husband's need to stay home while I recovered. Although the surgery was a year ago I had been covered all that time. I had no idea they allowed a year for this type of coverage. I appealed the decision due to extremely high prices for my prescription drugs, but I was denied. Since then I have hit dead ends time and time again.
I was told many times, in my efforts to regain the coverage Medicaid was providing, that I should apply for Extra Help. I continued to believe I would continue to have it because I had no idea I had it in the years prior. Finally I came to understand that Extra Help is actually a low-income subsidy that helps pay for prescription drugs. Now, our family is no where near poverty. We are simply in the same cast most of the nation is in at the moment so, again, I had no idea what or why I had these benefits. I assumed, biggest mistake we all make, that this was how Medicare worked. I never saw a 'donut hole' in my coverage so I assumed, bad girl, it had something to do with costs I don't run across. I became disabled at 25 and became eligible for Medicare at 26 years old. We are all just beginning to understand employer insurance dealings, let alone Medicare. I should have done my research.
Losing Medicaid and Extra Help seemed like no big deal to me. I had put my nose to the ground to find a Medicare Advantage plan that would cover more than traditional Medicare. I found one under United Health Care and it's great. It covers everything I need at locked in out-of-pocket costs. It comes with one downfall I did not know about Medicare Advantage plans. They all follow Medicare guidelines. In comes that dreaded 'donut hole' possibility. Again, I didn't realize it was approaching because I had lost Medicaid in August so I assumed, here's that word again, that meant Extra Help was gone as well. "Extra Help" sounded very much like Medicaid, interchangeable. Is Medicaid not extra help that you could receive? It was/is to me. No, no, no. Extra Help is actually a program. My Extra Help ended December 31, 2014. I received a notice, yes, but Medicaid, Medicare, supercalifragilisticexpialidotious. ??? These notices were foreign to me. Even employer and private insurance is a mess of jargon and loop holes no one understands. Now we are in the early months of 2015.
My husband works at the pharmacy where I get my prescriptions. He is nice enough to take control and make sure I get refills and such on time. He refilled everything he could at the end of December just in case a deductible, we didn't see coming, hits. I had one in the past so preparation was smart. I'm glad he did. With that in mind you can imagine it took me a bit to need a refill. "Insulin. That'll be $200+. Seizure medication. That'll be $260. Colitis. $95. Digestive enzymes. $45." Cough, cough, cough.."uh, WHAT?!" Something must be wrong. The pharmacy called my insurance while I simultaneously called for myself. This is when the nightmare began.
Here's how it works. There is a deductible to be met, $160. Then you begin paying for your drugs under the Tier system, a prescription vocabulary word meaning what category a drug is placed in. If you ask how they categorize drugs you will immediately realize no one really knows the answer. Tier 4 drugs are $95, Tier 3 drugs are $45, Tier 1 and/or 2 are around $8, and anything not in formulary....well, I haven't been able to decipher how they determine pricing, but obviously I have some. You have a limit of $2960 before you hit the gap or 'donut hole', this number is a combination of what the plan pays as well as your own out-of-pocket costs. Once you hit the $2960 you fall under 'gap coverage'. In gap coverage you pay 65% for generic drugs and 45% for brand name. If you look at that in terms of an actual prescription it does not look promising. One, just one, of my seizure medications is over $1000 for the generic meaning I am going to pay over $650 for one prescription. I have ten, four of which do not have generics available as of yet. What happens next you ask? Catastrophic coverage. Catastrophic coverage begins when your out-of-pocket costs, not the plans pay out as well, hit $4700. In this stage, you end up paying only 5% for your drugs. With a person like me you would think that would be hit quickly, but they get you when they start by counting their pay out as well as yours then do a switch when it comes down to counting only your costs. $4700. Do you have that under your couch cushions? Could you even follow the maze of numbers outlined? After a month and a half the pharmacy and I finally saw the potential for financial destruction. It would be difficult for any person or family to afford that every year when they have maintenance drugs long term. Even quick prescriptions could put a dent in your pocket. It is unbelievable that they help you get in the donut hole and retroactively eliminate their help to keep you in the hole. Capitalism and health care do not belong in the same sentence, let alone used against ignorant people.
Ignorant may seem like a derogatory term, but it is not. It definitely does not mean we, as patients, are stupid. It simply means we are uneducated insurance navigators. A lesson I learned the hard way. Be informed. Be prepared.
Every year we receive this giant package with a huge book and some pamphlets that drop out here and there, all regarding our benefits and any changes. Most of us keep it but it is never opened. Some toss it. Rarely does anyone actually dive into it. Hear me loud and clear when I say OPEN IT. Educate yourself. Use what you know about yourself for certain to begin. For myself I looked at hospital costs, ER co-pays, office visit co-pays, procedure out-of-pocket costs, and I simply checked to see if my drugs were on the plans formulary. I only looked at what I'd be paying, at the moment, for my drugs. I never looked beyond December 31 or thought to look at deductibles and stair steps. I knew I had lost low income subsidies and I spoke with the insurance agent about it. I am sure he tried to cover all his bases before I decided on a plan, but I was probably selectively hearing what I thought was important. Assumptions and arrogance will never do you good.
I thought I knew it all. I had been to school and worked in the health care field, my husband works in a pharmacy, and I am a very involved patient. I believed any "assumptions" I was making were "educated guesses". Two very different things. With those two words seeping out if my pores as I crumbled under the weight of cost versus need for meds I knew I had to figure this out but I didn't know how. I was embarrassed, humbled, and desperate.
I had options and I had to move fast. First, I called upon my parents for immediate assistance while I pulled myself together to get myself of the floor. My sister is a bulldog and will stop at nothing to make her little sister's life easier. An angel. She and I pulled our ideas together and bounced them back and forth to iron out details of each option. Here is what I faced and many Medicare patients have to face:
1) Divorce- If you are married the government takes the household income as a determining factor for low income subsidies. Couples who have been married decades sometimes get quiet divorces with all the legal necessities laid out in the divorce to cover what is appropriate for them. Children and family often are in the dark about the divorce, but it is the only way some people can afford medical care. This just wasn't an option I felt comfortable with for my family.
2) Talk with your doctor- Often times doctors can change a prescription to a lower cost drug to help the patient afford their meds. Many patients either talk to their doctor during a typical visit about what they can afford or what their plan will cover and the doctor obliges. It may also apply to office visits and procedures. Many times the doctor can schedule things in the most affordable ways for the patient. This does not work if there is no leeway for the doctor. In my case, there was no leeway for meds or office dealings.
3) Buy private health insurance- We hear about supplement plans and advantage plans for retired, elderly, Medicare patients. What many of us do not realize is these plans are not for disabled. In the state of Texas all insurance providers have to offer at least one Medigap plan for disabled under 65 or those with end stage renal disease. The catch is they have to approve you just as Medicaid or Medicare would, but each plan has different requirements for approval. In addition, plans that are associated with Medicare, meaning they are offered to patients or coupled with Medicare, have to follow Medicare guidelines for prescription drugs stair step set up. Medicare deducts a premium from your benefits check each month. Buying private insurance would also require a premium. Add in the out-of-pocket costs and it may not be very beneficial. In my case it was a moot option.
4) Stop taking prescription medications- I actually contemplated this because I was at a complete loss. We all see how blatantly wrong that actually is. Any where between 12-28% of Medicare patients stop taking their medications only because they cannot afford them. This is incredibly dangerous. Bottom line says you can't squeeze water out of a turnip and turnips sure don't pay for meds. That is my case. I had to look at it like this, not taking medications is deadly but financial ruin is not. Figure out a way to pay.
5) Get a loan- This sounds good in theory. If you take enough regular medications to get into the gap or even to get to catastrophic coverage you need extra money to pay for it. Loans are extra money that you have to pay back. If you can't afford it in the first place, how can you afford to pay back a loan? It may work for some. If that is what gets you there who cares what I say? I did the math for my situation and it would take two years for me to pay back a loan I would get to pay for one year of my medications. Tack on next year and the year after. Soon enough, I wouldn't even remember how much I owed or the bank would lock the doors every January when they saw me coming.
6) Online discounts- It is very possible to find discounts for medications online. Sometimes the manufacturer offers discounts. The drug reps even bring coupons to the doctors' offices and pharmacies. It is a bit tedious, but worth it. Common medications and new medications are the easiest to come by. Get into that cloudy area of lesser used meds and it can be tricky, sometimes hopeless. That was the way it turned out for me. It got to a point where the manufacturers customer service reps were making me feel like the biggest idiot on the planet. I got spoken to as if I should already know what discounts are offered. I even ran across a lot of them who had no idea the company they worked for made a drug of that name.
7) Employer insurance- If you are retired or disabled this option is often null and void. If you are married you may be in a good place to add coverage to your existing Medicare plan. Of course, as with any insurance, you have to wait for open enrollment which does not happen in January. If you are knowledgeable and prepared, jump on that open enrollment railway. If not, don't fret until you have exhausted all avenues. If a life event happens most employer insurance will allow the employee to add a dependent to their benefits. A life event includes marriage, divorce, death, loss of job, etc. It is determined by the Benefits Department or Human Resources. I, luckily, landed in this category. Due to the fact that I lost my low income subsidy, Extra Help, as of December 31, 2014 I was within the timeframe....sort of. We didn't apply for the addition until 45 days had passed. In our favor, for Medicare patients the time frame is widened a bit, but I also showed proof of attempts to appeal and/or manage the costs ourselves.
These were all the options given to me by Medicare, my insurance agent, my family, my research, you name it. It is hard to believe that these extreme options are all Medicare patients have to turn to. My words (I cannot call it wisdom) are to be fully educated on all your health care needs and options. We knew from day one that I could be added to my husband's insurance when I had to stop working. We got information on costs and laid out a pro's and con's list. Our immature minds thought it would take too much money out of his check so we couldn't afford it. Even when we came across this weapon of mass destruction called "The Gap", we got more information and laid it out. I was so certain there was a better option. I was so certain the government could not put people in need in such a difficult situation. I was certain other people in my situation had more options I just hadn't found yet. After trudging through the minefield of costs, information, and misinformation we came to the final decision to add me to his coverage. I can proudly say I have a PhD from the school of hard knocks in Medicare and its options.
I have always been an overachiever. School came easy to me and I thirst for knowledge. I have been entangled in the medical world since before I could even drive. Yet, I was so ignorant. I probably will come across more obstacles that humble me with my own ignorance on the matter. This, however, drives me to be even more active in the changes and guidelines outlined for any and all coverage I get. I learned to save receipts for tax deductions. I have a file folder for it all. I organize and juggle appointments. I am diligent about my medications. I research every aspect of the diagnoses I receive along the way. I am the poster child of Type A personality. I missed this. I missed some of the most important information I need. I actually didn't miss it, I disregarded it.
I don't enjoy complaining. I don't enjoy laying out financial struggles. I don't enjoy spilling my guts about disability and Medicare. I certainly don't enjoy Medicaid. The truth is, these topics have a negative stigma. A few people abuse the system and it puts a bad taste in the mouths of those working so hard and still paying towards the system. But, if you flip that you see that many who paid into the system and did everything right often need to rely on that system. Someday we all do. Take the stigma away. Away from finances, needs, and charity. We all have them in some way, shape, or form. And charity is exactly that, charity. If we cannot open the conversation about some of the most common struggles for many Americans today, we continue to live in a lie. A lie that is turned in to a façade'. A façade' of a carefree, luxury filled life. Underneath that façade' is debt or secrets or holes. God put people on this earth in masses to come together as a community and help each other. We all have a place in this world, but we are all needed or the puzzle isn't complete. This includes knowledge. Get out there and make sure all your ducks are in a row. If you see someone struggling along the way and you have knowledge that may be useful, pass it on. These tangled webs of money making health care fields are impossible to get through without an armor of knowledge. As embarrassed and humbled as I am by all of this, I am proud to have found a solution. I can now move forward with more wisdom. I have many years to come and yearn for more wisdom no matter how hard it knocks me down.
When we first moved to Texas things seemed to be running smoothly. I updated my contact information and lost no time receiving my benefits. I needed to enroll in a new Part D Prescription plan because they vary state to state. That was a bit confusing but with a lot of questions and tenacity I figured it out. Because we had moved here just before my major surgery and my husband stayed home to care for me, I qualified for Medicaid in Texas. Why not take advantage of all the help you can get if you are doing your best to help yourself? I did not understand that it was a short-term qualification due to the fact I had no idea how they determine eligibility.
Every year Medicaid reviews all cases to determine requalification. They send out a notice with your information on it, ask if anything has changed, require a signature, and give you an easy prepaid envelope to send it all back. Neat and tidy. Well, not so neat. Thinking nothing had changed because my husband has worked the same job for seven years and I have received the same check for the last several years, I was shocked when I received a notice of loss of coverage beginning August 1, 2014. After running in circles trying to figure this determination out I was finally told that I had only qualified due to my husband's need to stay home while I recovered. Although the surgery was a year ago I had been covered all that time. I had no idea they allowed a year for this type of coverage. I appealed the decision due to extremely high prices for my prescription drugs, but I was denied. Since then I have hit dead ends time and time again.
I was told many times, in my efforts to regain the coverage Medicaid was providing, that I should apply for Extra Help. I continued to believe I would continue to have it because I had no idea I had it in the years prior. Finally I came to understand that Extra Help is actually a low-income subsidy that helps pay for prescription drugs. Now, our family is no where near poverty. We are simply in the same cast most of the nation is in at the moment so, again, I had no idea what or why I had these benefits. I assumed, biggest mistake we all make, that this was how Medicare worked. I never saw a 'donut hole' in my coverage so I assumed, bad girl, it had something to do with costs I don't run across. I became disabled at 25 and became eligible for Medicare at 26 years old. We are all just beginning to understand employer insurance dealings, let alone Medicare. I should have done my research.
Losing Medicaid and Extra Help seemed like no big deal to me. I had put my nose to the ground to find a Medicare Advantage plan that would cover more than traditional Medicare. I found one under United Health Care and it's great. It covers everything I need at locked in out-of-pocket costs. It comes with one downfall I did not know about Medicare Advantage plans. They all follow Medicare guidelines. In comes that dreaded 'donut hole' possibility. Again, I didn't realize it was approaching because I had lost Medicaid in August so I assumed, here's that word again, that meant Extra Help was gone as well. "Extra Help" sounded very much like Medicaid, interchangeable. Is Medicaid not extra help that you could receive? It was/is to me. No, no, no. Extra Help is actually a program. My Extra Help ended December 31, 2014. I received a notice, yes, but Medicaid, Medicare, supercalifragilisticexpialidotious. ??? These notices were foreign to me. Even employer and private insurance is a mess of jargon and loop holes no one understands. Now we are in the early months of 2015.
My husband works at the pharmacy where I get my prescriptions. He is nice enough to take control and make sure I get refills and such on time. He refilled everything he could at the end of December just in case a deductible, we didn't see coming, hits. I had one in the past so preparation was smart. I'm glad he did. With that in mind you can imagine it took me a bit to need a refill. "Insulin. That'll be $200+. Seizure medication. That'll be $260. Colitis. $95. Digestive enzymes. $45." Cough, cough, cough.."uh, WHAT?!" Something must be wrong. The pharmacy called my insurance while I simultaneously called for myself. This is when the nightmare began.
Here's how it works. There is a deductible to be met, $160. Then you begin paying for your drugs under the Tier system, a prescription vocabulary word meaning what category a drug is placed in. If you ask how they categorize drugs you will immediately realize no one really knows the answer. Tier 4 drugs are $95, Tier 3 drugs are $45, Tier 1 and/or 2 are around $8, and anything not in formulary....well, I haven't been able to decipher how they determine pricing, but obviously I have some. You have a limit of $2960 before you hit the gap or 'donut hole', this number is a combination of what the plan pays as well as your own out-of-pocket costs. Once you hit the $2960 you fall under 'gap coverage'. In gap coverage you pay 65% for generic drugs and 45% for brand name. If you look at that in terms of an actual prescription it does not look promising. One, just one, of my seizure medications is over $1000 for the generic meaning I am going to pay over $650 for one prescription. I have ten, four of which do not have generics available as of yet. What happens next you ask? Catastrophic coverage. Catastrophic coverage begins when your out-of-pocket costs, not the plans pay out as well, hit $4700. In this stage, you end up paying only 5% for your drugs. With a person like me you would think that would be hit quickly, but they get you when they start by counting their pay out as well as yours then do a switch when it comes down to counting only your costs. $4700. Do you have that under your couch cushions? Could you even follow the maze of numbers outlined? After a month and a half the pharmacy and I finally saw the potential for financial destruction. It would be difficult for any person or family to afford that every year when they have maintenance drugs long term. Even quick prescriptions could put a dent in your pocket. It is unbelievable that they help you get in the donut hole and retroactively eliminate their help to keep you in the hole. Capitalism and health care do not belong in the same sentence, let alone used against ignorant people.
Ignorant may seem like a derogatory term, but it is not. It definitely does not mean we, as patients, are stupid. It simply means we are uneducated insurance navigators. A lesson I learned the hard way. Be informed. Be prepared.
Every year we receive this giant package with a huge book and some pamphlets that drop out here and there, all regarding our benefits and any changes. Most of us keep it but it is never opened. Some toss it. Rarely does anyone actually dive into it. Hear me loud and clear when I say OPEN IT. Educate yourself. Use what you know about yourself for certain to begin. For myself I looked at hospital costs, ER co-pays, office visit co-pays, procedure out-of-pocket costs, and I simply checked to see if my drugs were on the plans formulary. I only looked at what I'd be paying, at the moment, for my drugs. I never looked beyond December 31 or thought to look at deductibles and stair steps. I knew I had lost low income subsidies and I spoke with the insurance agent about it. I am sure he tried to cover all his bases before I decided on a plan, but I was probably selectively hearing what I thought was important. Assumptions and arrogance will never do you good.
I thought I knew it all. I had been to school and worked in the health care field, my husband works in a pharmacy, and I am a very involved patient. I believed any "assumptions" I was making were "educated guesses". Two very different things. With those two words seeping out if my pores as I crumbled under the weight of cost versus need for meds I knew I had to figure this out but I didn't know how. I was embarrassed, humbled, and desperate.
I had options and I had to move fast. First, I called upon my parents for immediate assistance while I pulled myself together to get myself of the floor. My sister is a bulldog and will stop at nothing to make her little sister's life easier. An angel. She and I pulled our ideas together and bounced them back and forth to iron out details of each option. Here is what I faced and many Medicare patients have to face:
1) Divorce- If you are married the government takes the household income as a determining factor for low income subsidies. Couples who have been married decades sometimes get quiet divorces with all the legal necessities laid out in the divorce to cover what is appropriate for them. Children and family often are in the dark about the divorce, but it is the only way some people can afford medical care. This just wasn't an option I felt comfortable with for my family.
2) Talk with your doctor- Often times doctors can change a prescription to a lower cost drug to help the patient afford their meds. Many patients either talk to their doctor during a typical visit about what they can afford or what their plan will cover and the doctor obliges. It may also apply to office visits and procedures. Many times the doctor can schedule things in the most affordable ways for the patient. This does not work if there is no leeway for the doctor. In my case, there was no leeway for meds or office dealings.
3) Buy private health insurance- We hear about supplement plans and advantage plans for retired, elderly, Medicare patients. What many of us do not realize is these plans are not for disabled. In the state of Texas all insurance providers have to offer at least one Medigap plan for disabled under 65 or those with end stage renal disease. The catch is they have to approve you just as Medicaid or Medicare would, but each plan has different requirements for approval. In addition, plans that are associated with Medicare, meaning they are offered to patients or coupled with Medicare, have to follow Medicare guidelines for prescription drugs stair step set up. Medicare deducts a premium from your benefits check each month. Buying private insurance would also require a premium. Add in the out-of-pocket costs and it may not be very beneficial. In my case it was a moot option.
4) Stop taking prescription medications- I actually contemplated this because I was at a complete loss. We all see how blatantly wrong that actually is. Any where between 12-28% of Medicare patients stop taking their medications only because they cannot afford them. This is incredibly dangerous. Bottom line says you can't squeeze water out of a turnip and turnips sure don't pay for meds. That is my case. I had to look at it like this, not taking medications is deadly but financial ruin is not. Figure out a way to pay.
5) Get a loan- This sounds good in theory. If you take enough regular medications to get into the gap or even to get to catastrophic coverage you need extra money to pay for it. Loans are extra money that you have to pay back. If you can't afford it in the first place, how can you afford to pay back a loan? It may work for some. If that is what gets you there who cares what I say? I did the math for my situation and it would take two years for me to pay back a loan I would get to pay for one year of my medications. Tack on next year and the year after. Soon enough, I wouldn't even remember how much I owed or the bank would lock the doors every January when they saw me coming.
6) Online discounts- It is very possible to find discounts for medications online. Sometimes the manufacturer offers discounts. The drug reps even bring coupons to the doctors' offices and pharmacies. It is a bit tedious, but worth it. Common medications and new medications are the easiest to come by. Get into that cloudy area of lesser used meds and it can be tricky, sometimes hopeless. That was the way it turned out for me. It got to a point where the manufacturers customer service reps were making me feel like the biggest idiot on the planet. I got spoken to as if I should already know what discounts are offered. I even ran across a lot of them who had no idea the company they worked for made a drug of that name.
7) Employer insurance- If you are retired or disabled this option is often null and void. If you are married you may be in a good place to add coverage to your existing Medicare plan. Of course, as with any insurance, you have to wait for open enrollment which does not happen in January. If you are knowledgeable and prepared, jump on that open enrollment railway. If not, don't fret until you have exhausted all avenues. If a life event happens most employer insurance will allow the employee to add a dependent to their benefits. A life event includes marriage, divorce, death, loss of job, etc. It is determined by the Benefits Department or Human Resources. I, luckily, landed in this category. Due to the fact that I lost my low income subsidy, Extra Help, as of December 31, 2014 I was within the timeframe....sort of. We didn't apply for the addition until 45 days had passed. In our favor, for Medicare patients the time frame is widened a bit, but I also showed proof of attempts to appeal and/or manage the costs ourselves.
These were all the options given to me by Medicare, my insurance agent, my family, my research, you name it. It is hard to believe that these extreme options are all Medicare patients have to turn to. My words (I cannot call it wisdom) are to be fully educated on all your health care needs and options. We knew from day one that I could be added to my husband's insurance when I had to stop working. We got information on costs and laid out a pro's and con's list. Our immature minds thought it would take too much money out of his check so we couldn't afford it. Even when we came across this weapon of mass destruction called "The Gap", we got more information and laid it out. I was so certain there was a better option. I was so certain the government could not put people in need in such a difficult situation. I was certain other people in my situation had more options I just hadn't found yet. After trudging through the minefield of costs, information, and misinformation we came to the final decision to add me to his coverage. I can proudly say I have a PhD from the school of hard knocks in Medicare and its options.
I have always been an overachiever. School came easy to me and I thirst for knowledge. I have been entangled in the medical world since before I could even drive. Yet, I was so ignorant. I probably will come across more obstacles that humble me with my own ignorance on the matter. This, however, drives me to be even more active in the changes and guidelines outlined for any and all coverage I get. I learned to save receipts for tax deductions. I have a file folder for it all. I organize and juggle appointments. I am diligent about my medications. I research every aspect of the diagnoses I receive along the way. I am the poster child of Type A personality. I missed this. I missed some of the most important information I need. I actually didn't miss it, I disregarded it.
I don't enjoy complaining. I don't enjoy laying out financial struggles. I don't enjoy spilling my guts about disability and Medicare. I certainly don't enjoy Medicaid. The truth is, these topics have a negative stigma. A few people abuse the system and it puts a bad taste in the mouths of those working so hard and still paying towards the system. But, if you flip that you see that many who paid into the system and did everything right often need to rely on that system. Someday we all do. Take the stigma away. Away from finances, needs, and charity. We all have them in some way, shape, or form. And charity is exactly that, charity. If we cannot open the conversation about some of the most common struggles for many Americans today, we continue to live in a lie. A lie that is turned in to a façade'. A façade' of a carefree, luxury filled life. Underneath that façade' is debt or secrets or holes. God put people on this earth in masses to come together as a community and help each other. We all have a place in this world, but we are all needed or the puzzle isn't complete. This includes knowledge. Get out there and make sure all your ducks are in a row. If you see someone struggling along the way and you have knowledge that may be useful, pass it on. These tangled webs of money making health care fields are impossible to get through without an armor of knowledge. As embarrassed and humbled as I am by all of this, I am proud to have found a solution. I can now move forward with more wisdom. I have many years to come and yearn for more wisdom no matter how hard it knocks me down.
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