My Almost Broken Back

I am at a point in my life where I am not sure how much more I can take.  Where if one more ineffectual policy is passed, I might break.  I have heard the term “Semper Gumby” in reference to the Marine Corp, and though I am an Air Force wife, I believe this phrase applies to me at this moment.  I must be flexible, more flexible than I have ever been.  And I must be able to snap back into shape, like Gumby.

Last week I was told about an upcoming TRICARE policy change that is ineffectual and disregards patient care.  Military families, service members, veterans, and retirees are going to face yet another cut to their medical care.  This time though, TRICARE has made changes to their pharmaceutical policies in regards to compounding pharmacies.

“Starting July 24, TRICARE will no longer cover compounded prescriptions that contain drugs not approved by the Food and Drug Administration,” according to Navy Times.

Appearances are truly deceiving with this policy change.  I mean, who wouldn’t want a medication that isn’t FDA approved?  After all, look at what happened in Boston with the meningitis outbreak and the bulk processing that was used in those compounding pharmacies.  However, not every compounding pharmacy is like the one from Boston.

Patients need compounding pharmacies.  These pharmacists tailor-make medications to meet the individual healthcare needs of the patient.  Children and adults are allergic to dyes, soy, gluten, lactose just to name a few, and those patients must have compounded medications.  Children with special needs such as Autism, or those that require a feeding tube, need specialty, compounded medications.

While this policy that states that FDA approved medications will be approved by TRICARE and Express Scripts, that’s not entirely the case.  After speaking with my pharmacist in Fayetteville, NC, I have discovered that nothing – NOTHING – will be covered.

“TRICARE is stating that they are not covering compounded medications because they are made using ‘bulk chemicals not approved by the FDA’.  Compounded medications use United States Pharmacopeia (USP) and National Formulary (NF) bulk chemical ingredients.  These chemicals are purchased from a licensed FDA vendor who will perform additional analytical testing to ensure it conforms to all national and international standards.  These are the same chemicals that are used by drug manufacturers which make FDA approved medications and products.” –Letter from Stewart Compounding Pharmacy

Let’s break that paragraph down and translate what it actually means.  The first part provides a summary of the new TRICARE policy – what TRICARE is not going to cover and why.  Okay, well that’s good to know.  The middle and end are what really get to me.  A non-profit, United States Pharmacopeia and the National Formulary use bulk compounding ingredients which are actually bought and paid for by a licensed FDA vendor.  The people who make up our list of medications buy ingredients from an actual FDA-approved vendor.  Also, USP is willing to go over these chemicals and ingredients just to ensure that FDA standards are met.

Again it appears that this shouldn’t be an issue and that compounded medications that are not FDA-approved will not be covered, right?  Wrong.  It’s taken me a few days of research, but I have finally found out why no medications will be covered despite the “FDA approval” disclaimer from TRICARE.

When medications are compounded to meet the individual needs of the patient, the FDA approved formula of that medication is altered.  It’s that altering of the original formula that is not approved.

That is why no compounded medications will be approved by TRICARE.  The moment the FDA approved formula is changed to the meet the need of the patient; the changed formula of medication is no longer considered FDA-approved.  It could be the same medication just changing from solid to liquid form!!!!  Do you know how asinine that is???

Thank you TRICARE for another policy change that is not at all user friendly. You, TRICARE, have given your beneficiaries a policy that will only negatively affect patient care at all levels.

I am so MAD!  I’m mad and frustrated.  I feel like I’m banging my head on a wall trying to explain to people why this is a HORRID policy change.  People really don’t understand why this is a problem and why families are getting tired of fighting.  I’m exhausted and never in my life have I felt this defeated.

I have spent almost two years advocating on behalf of military families to our elected officials.  For almost two years, they have all agreed that TRICARE policy is helpful to one entity only and that’s TRICARE; yet we see little positive change.  For every step forward, it’s at least two steps back.

How can families that are already pushed to the limits get back up and fight again and again?  We are pushed to limits with multiple deployments, loss of spousal employment, lackluster pay, cuts in benefits, and broken promises.

My husband pays for our insurance with his life.  We pay for our insurance with the lives of men and women who volunteer to be a part of something bigger than them.  This is how we are thanked . . . with cutbacks and lies.

And while I feel defeated now, I know I will get up again and fight another day.  I can’t fight this alone, and I shouldn’t have to.  If TRICARE is willing to install policies like this one, then other insurance companies could, too.  Almost 75% of children’s medications are compounded.  That’s all children in America, not just military children.

This country can no longer afford to take advantage of the most underprivileged, overworked group of people.

We military should not have to fight for our rights and benefits at home while we fight for the protection and freedom of our nation on the frontline.  The time has come for our elected officials to say enough is enough to TRICARE.

It’s time to stand up for what is right.  Join me!!!

Click on this link so you can contact your elected official.

28 thoughts on “My Almost Broken Back

  1. A hundred years ago when I worked as a pharmacy technician it was rare that insurance companies would pay for anything compounded. I think that’s why certain ointments and creams became brands (like triple paste for diaper rash). I’m actually kinda surprised Tricare held out as long as they did. Not that I think it’s right, but it’s certainly been the trend.

    • That is surprising to know. The downfall is that this will hurt our EFMP families or children who have allergies like Ian. He’s allergic to red dye and needs compounded medications. It will be interesting to see how this all plays out. Everything is being blamed on the Boston pharmacy, but 6 regulators came in to inspect that pharmacy before the outbreak. No follow up,so that’s the problem with that pharmacy. So maybe we should make sure the regulations and inspectors know what they are doing. I’m hoping to get this policy reversed though.

    • Peggy, you are so great for sharing this. Thank you. Trying to figure out who to talk to next besides our elected officials is where I’m at. I want to make sure that I speak to the right people about this.

  2. Susan! Can you please tell me about the back story on the Boston pharmacy? Our first indication that things were going south was last month when we couldn’t get a compounded medication sent to AK. AK has two compound pharmacies that I know of BUT having a child on the spectrum, we use naturopath care in another state that have the ability to prescribe medication (they do not have this ability in AK-so can’t get their prescriptions recognized here). We are a military family too, my older child has a dye allergy and my younger child is on the autism spectrum and has yeast overgrowth in her gut that we have been trying to treat with some compounded medication. For both my children it is imperative that we make all their meds safe to use! I’m just in sticker shock because as a military family and one with a child on the autism spectrum (already have increased out of pocket costs for care not covered), can not afford a 14 day supply of compounded nystatin for 164.00 on our salary on a regular basis! I am willing to meet with our State Representative over this since we are in a capitol city but I need to know more about why this is happening!! Thanks!

    • Thank you for your comment. I will do my best to explain all of this so you can speak to your elected officials.

      There was a meningitis outbreak last year in roughly Nov 2012 due to a compounding pharmacy in Boston. Sadly, people lost their lives to the illness and now compounding pharmacies are in the spotlight. What’s interesting about that specific pharmacy is that SIX inspectors from the FDA and the US Pharmacopoeia inspected the pharmacy and told the owners that there were violations and those violations needed to be fixed. Despite 6 inspections, very little follow up was done, so there was a meningitis outbreak.

      So now, one bad apple is ruining the bunch. The big problem is that the moment the medication is changed from the original formula, so with a dye to dye free, that new formula is now considered not FDA approved. It’s still the same medication. So when Tricare says they will cover FDA approved medications that’s not really going to happen. My son has a dye allergy too so this will be a huge problem for us as well.

      I’m sorry you are having to go through this. I am thankful that you reached out. It’s families like yours that I am thinking about and promising to to make a change for. We are military and always take care of our own.

  3. A pregnant friend was warned that her progesterone shot would no longer be covered by Tricare since it is a compounding medication. She informed me that a pregnant woman needed two vials of progesterone for the last 20 weeks of pregnancy. At $75 a bottle (10 weeks of doses) X 2 = more than what a young enlisted couple might be able to afford. It is truly sad that this decision can effect the lives of our young military families so much. Keeping a baby in utero is much is much better than early delivery and to my untrained medical opinion, and cost much less than months of a NICU stay. Very sad military families are being affected this way.

    • That is incredibly frustrating. I’m so sorry for your friend and let her know there are people working on this issue. You really zeroed in on the issue. Tricare will say it’s about cost, but we all know a NICU is more expensive than a prescription. It’s this type of thinking that I have been working against for 2 years. We military families will overcome this and take care of each other.

  4. My husband is deployed, and he just found out that my son could potentially lose ABA therapy on September 30th. The doctor has assured me that he still qualifies for ABA therapy, but 80% of his clinic are Tricare patients, and I don’t know how many of those children still qualify for ABA therapy. So even if he qualifies for ABA therapy, there will be no ABA therapy clinics to give him ABA therapy. These policies are utterly RIDICULOUS. What a slap in the face?! And did you hear that congress is voting to spend $100 Billion on opening a National Park on the MOON. Really?! You can’t afford health care, but let’s send rich old farts to the moon in RVs.

  5. I just spent an hr on the phone with these clowns. If you can get a letter of medical necessity explaining why the member HAS to have a non covered item, they will review it. 1.866.684.4488

    • Thank you Kris. I knew they were “thinking” about exceptions to policy, but that’s all it is…a thought. And I love that you called them clowns. That was my plan for my son and his dye allergy. You’re so awesome!

    • Thank you for including the phone number. I will be making this call tomorrow! I have an allergy to pork. All capsules are made from glycerine, which is derived from pigs.

  6. This is a huge hit for us as well…I recovered my son from ” autism” through the use of a compounded mitochondrial support, methyl b12 and flucanazole..I agree how much can we possibly take before it breaks us?

  7. By you and others (who make up a very small percentage of the majority of the military) making a stink about this small hiccup is going to cost the rest of us our medical care. Tricare is a business, plain and simple and the point of a business is to make money. There are plenty of medications I use on a monthly basis that is not covered by Tricare and I have to pay our of pocket. If you don’t like the system find a different one. You are more than welcome to buy a secondary health insurance to cover your precious compound medications, but be prepared this company may not cover your prescriptions either.

    • I’m sorry that you feel that way about us who “make a stink about this small hiccup.” This isn’t a small hiccup for us; it’s the well-being of a family member who cannot get a medication in any other form than a compounded form. While paying out of pocket doesn’t seem like a big deal, to a family that has a child with a feeding tube it is. Medications can cost thousands per month and I simply don’t make that kind of money. I do have a secondary insurance that will cover my precious compounded medications for my son that has a fatal allergy.

    • What an ignorant and selfish response. I am shocked that a fellow military member or spouse would be so negative.

  8. Susan, I am so sorry this is happening to you and others. While this new restriction doesn’t affect me (yet), I had an epiphany yesterday. We got to Lackland about a month ago and I have had nothing but problems getting seen here. I pushed and pushed and got to see a cardiologist yesterday. By the time of my appointment, I had convinced myself I was overreacting (I had a heart attack in February of this year at the age of 46 so I’m more than a little concerned about my overall health and might be oversensitive) but the cardiologist saw some issues on my ekg and is following up. I am so glad I pushed back. Honestly, allowing myself to be defeated by their system is one of the reasons I have ignored my health for years. I will no longer be nice about it. I don’t care if the “clowns” think I’m pushy. I won’t be rude, but I will not be lost among the cracks anymore. Fight on, sister.

    • Good for you for pushing for your healthcare. I don’t think anyone can be overly sensitive about their healthcare!

      Thank you for you support and encouragement; it’s greatly appreciated.

  9. Susan,
    Thank you for developing this issue in such a thoughtful way. I feel the exact same way. I want to be able to say I am too tired, and done with the fight, but I can’t. I know that the energy I put into getting services put together, and funded help so many other families as well. I have had to fight for everything for my son. Just when things are going really well, we get the carpet pulled out from under us regarding services. Honestly, when does it end? My son is a different child due to the interventions of ABA. It is absolutely necessary.

    Not covering our compounded medications? I just don’t have words for this. This is a push that needs to happen.

    • Thank you for your very encouraging words! I feel the same way that you do. Things seem to be going well and then the other shoe drops.

      You have my support and I will help you as best I can!

  10. can you tell me where you got the stat that “Almost 75% of children’s medications are compounded” ?? can you give me an example of a common med that is compounded? i was under the impression that only certain pharmacies actually do compounding. i did not think that the chain pharmacies offered compounded meds to patients, is that true?

    • Misty, thank you for your questions. I think it’s important for people to ask those questions and you did. I got the stat from the Children’s Hospital Association. I work with them on the TRICARE for Kids updates that we are hoping to present to DoD in a couple of months.

      You are right, only certain pharmacies do provide compounding. An example of a medication that needs to be compounded is dye free antibiotics. My son is allergic to red-dye and it’s getting worse. He must go to specialty small business compounding pharmacy. The chains and most military treatment facilities do not offer specialty medications.

      There are some medications that children with feeding tubes must have made from solid to liquid. Those kids will lose coverage. From what I’ve been told, TRICARE is meeting to discuss exceptions to policy. I am still researching that and will get back to everyone.

      Thank you again and I love that y’all are Meet the Cottons…that’s great!!!!

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