Fighting for Oxygen

Fighting for Oxygen

I recently had a victory in a fight for oxygen, and wanted to share what I learned through the process.

I had to fight for oxygen … pretty basic need, right?

Like many of you, I’m on supplemental oxygen 24/7. It’s been two years, and it has been a fight from the very beginning to get various insurances and providers to pay for it. I haven’t always been victorious.

I’ve had a variety of stationary and portable oxygen concentrators, as well as portable gas tanks. I now know more about supplemental oxygen than I ever wanted to!

When our lungs are damaged and compromised, we can’t take in the amount of oxygen we need to send to the rest of our body. Not getting enough oxygen can also put a strain on your heart and other organs, including your brain, which all need oxygen to stay healthy.

It is super important to use an oximeter to measure and be aware of your oxygen levels.  According to the Mayo Clinic, a healthy person will have oxygen saturation levels between 95 and 100 percent. My docs have told me to keep my levels above 93% with supplemental oxygen. Levels below 90% should be considered a medical emergency, and symptoms include a bluish coloring to the skin, rapid or difficult breathing, unexplained restlessness, or apprehension or confusion.

Fighting to make sure you have the oxygen you need is essential!

Oxygen therapy can keep your lungs healthier for longer, and can make a difference in your everyday life. It can help you stay active and independent, and be able to pursue activities that are important to you. You just feel better!

liquid-oxygentanksMy most recent fight involved getting a provider to authorize liquid oxygen delivered to my home. It took three months of fighting and going up the chain to get these tanks delivered to my house, and two more months to get two portable “strollers” delivered to my house so I could use the liquid oxygen when out and about. That was two weeks ago.

Liquid oxygen is expensive, so I understand the reluctance to provide it. I also understand that it is better for me than the concentrators and gas oxygen I’d been using. This became even more true when I started needing 7 lpm, and my portable oxygen concentrator was no longer safe for me to use when leaving my home (it only went to 6 lpm – pulse).  I advocate for myself regularly but don’t get in the trenches and fight very often …only when necessary or an injustice has been done. Getting the oxygen I need qualifies.

Having a serious illness and dealing with lots of doctors and providers has given me lots of practice advocating for myself.

Here are some general principles I’ve learned:

~ Advocate for yourself because you are worth it. God created you. You are precious. You deserve to get what you need.

~ The folks who aren’t helping you have their own problems. I don’t mean this as a slam. The 10 people who denied my request had their own job to do. I’m sure I have no idea what was going on behind the scenes. You and your needs are important, no matter what else is going on with others.

~ Be polite but firm. The first five times I was polite, and gave them time and room to respond. Their tactic was to never call me back. The next five times I was polite and firm, and told them they didn’t know me, but I would not give up on getting the liquid oxygen my doctor prescribed. I just kept asking for the next person up the ladder. Finally they said yes. Getting this liquid oxygen was so critical for me that I would have taken legal action, and I told them this. Fortunately I didn’t have to. Click here to see my final letter to the provider.

~ Don’t give up until your avenues are exhausted, or the fight is costing you too much personally. My first experience trying to get oxygen prescribed was two years ago. After four weeks of effort, I was distraught trying to get oxygen delivered while adjusting to the severity of my diagnosis. One afternoon my husband walked in, saw me sobbing on the phone and told me to hang up; we would buy the $3K machine ourselves. We put it on a 0% credit card and paid it off over time.

My individual plan (at the time) did not have oxygen on its list of “essential durable medical equipment” (even though group plans did). So even though my doctor prescribed it, the plan wouldn’t authorize it. I made a formal complaint to the board of managed care in my state, but it couldn’t make the plan pay because providing oxygen was not listed in the contract I signed. We paid for my O2 for six months, then changed plans.

~ Even if you aren’t successful, congratulate yourself for being a proud warrior on your behalf. Even if you don’t win the particular battle, you won a larger more important battle by advocating and fighting for yourself.

~  You are worth the fight

~  You are valuable

~  You deserve to get what you need

~  Your comfort and quality of life matters NOW

~  You may need to enlist help from others who can help you

I really hope this topic helps you. You may not be dealing with fighting for oxygen, but I know you may need to fight for some aspect of your care that is recommended, now or in the future. You Matter, You are Valuable, You Count, You are Worth the Effort.

I would love to get your input.

What stood out to you? What part of my story could you relate to? What has been your experience getting oxygen or other services you need? Do you have any tips to share with us?

Please leave your comments below, and share on social media or via email with others who might benefit!

Note: Pulmonary Fibrosis 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 Pulmonary Fibrosis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

 

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2 comments

  1. Randy says:

    Dear Warrior-
    I am so moved by your documenting your journey, and am learning so much on this website. Thank you for helping so many, despite your own struggles with this ugly disease.

    I was very impressed with your letter, taking firm action, advocating for yourself. It is shameful we have to deal with such poor care, and sometimes even non-care. But as long as medical care is the US is a for-profit machine, the struggle will remain.

    Prior to my lung disease, and other comorbidities, one of my careers was ten years working for an HMO. Boy, did I learn a lot about insurance. I switched careers, but never gave thought to how my training would one day be needed. Fast forward to becoming Medicare eligible. I figured I knew the HMO ropes, so selected a Medicare Advantage Plan HMO. For both of us. I had to fight like all get out for both of our healthcare. Signed us up for patient portals, got printouts of every single test result, went to every single appointment with spouse as well as my own.

    Various problems and ways around shoddy care. Overworked, sometimes careless office staff not returning phone calls, setting appointments, not entering referrals, they never got faxes from patients and other docs. If you don’t have access to a fax and that’s how they communicate in writing, get your own machine. Type up a reusable memo cover for faxing, giving name, date, to, from, phone and fax numbers from as well as the doctor phone and fax number, and subject. Save copy, always. In body of fax, describe what is needed, which doctor wants which test or appointment, and request the referral or other action. Make sure the insurance company has the doctor name, location, on the approved providers list. Address must match in the insurance system with the actual doctor address. Contract technicality. Print, fax this to your primary care doc. Call PCP same day to confirm receipt of the fax, notate on the document who confirmed. If five days have gone by without action, print copy of original, write or stamp second request on top margin, initial, and resend fax. Take photo or scan to keep. Should it be necessary, send third request on the copy of the second request memo, writing third request beneath second request, initial, date, and fax. Call and confirm receipt. Rarely will you need to take further action. However, if still not acknowledged, contact your insurance company, ask where to fax a complaint. Write the insurance company a fax cover letter advising of attempts 1-3 to obtain referral, test, whatever, and send that to the HMO complaints department, along with the third request copy that has the names of the theee people at the doctors office who confirmed receipt of the three faxed referral requests. The HMO will call the doctor, and most likely you will get the referral within a day or two. If not, you call the HMO and request a supervisor to discuss your needed services, which are not being received. The magic words are these, “the Doctor is not meeting my medical needs”…they will try to assist you in changing doctors. Do not accept this. It will delay your medical care, as you will have to go to a new PCP after the first of the month, and start the specialist referral process all over again.

    Now, for those HMOs which try to stall or outright deny care, hiding behind the reason, “the PCP didn’t authorize it, call the PCP, the next step is the formal appeals process. Escalate the complaint to an appeal. All must be in writing. You created your own audit trail if you’ve followed the steps above, just make an appeal cover sheet. One thing to add is a cc at the bottom, and that copy goes to your state department of insurance. Add copies of everything and send where the insurance company advises appeals are to be sent. Send the same packet to the state department of insurance. Also cc your primary care doctor and the specialist requesting the test, treatment, etc, as a courtesy, to keep all in the loop.

    Only in the most extreme cases will you need to escalate further. But if you must, the next appeal is to the HMO Medical Director. Plead your case with any technical information suitable to bolster your case. You are talking with a doctor at this point, so peer review studies, best practice clinical guidelines, whatever is medically appropriate for your request, goes along with the appeal to the HMO Medical Director.

    If still denied, you now may wish to seek legal consult. Up until now, it has cost little more than your time, some ink, paper, and fax cost. Not too bad.

    Follow these steps to cut through HMO red tape, tried and true. I used to write appeals for a BC/BS HMO, and was once nicknamed Poison Pen. The process works. And I’ve taken the mystery out of it for you!

    • Dear Randy,
      Thanks so much for this wonderful information! It sure helps to get the scoop on how things really work behind the scene. Excellent. So appreciate you sharing your wisdom and experience with us.

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