Luke,

Check your Rx for oxygen therapy.  If it doesn't state "Cluster Headache" as the condition being treated with oxygen therapy, you'll need to call your physician and have the Rx rewritten to add "Cluster Headache" as the condition being treated.  If you don't do this, you're in for some heavy sledding with the idiot bureaucrats you're dealing with.

On the other hand, if your Rx for oxygen therapy does state "Cluster Headache" as the condition being treated with oxygen therapy, politely tell the bureaucrats that testing for blood oxygen levels is NOT REQUIRED when a prescription for oxygen therapy is written as an acute treatment for cluster headaches and that your oxygenation levels are normal!

I posted the following in May of 2009 but can't find it now.  It's a long winded post but it covers most if not all the important things you and your physician need to know about prescribing oxygen therapy for cluster headache.

Obtaining A Prescription For Oxygen Therapy and Playing Hardball With Your Medical Insurance Company If They Do Not Cover Oxygen Therapy

If you don’t have a prescription for oxygen therapy, the following course of action has worked for many of us.  See your doctor or neurologist and ask for a prescription for oxygen therapy as an abortive for your cluster headaches.  It is very important that your prescription is written properly.   Depending on your medical insurance coverage, your physician may need to complete a Certificate of Medical Necessity (CMN).  The title of is form is “Certificate of Medical Necessity CMS-484 — OXYGEN”.  If it’s required, this documents needs to be signed by your physician and like the prescription it must state that cluster headache is the condition being treated.  If Cluster Headache is not specified in the Rx or CMN, the bureaucrats will try to force you into tests for oxygen saturation…  More on this below.

Many of the private medical insurance companies and Medicaid use existing coverage rules for oxygen therapy developed by the Centers for Medicare and Medicaid Services (CMS), an agency of the Department of Health & Human Services (HHS).   These rules treat prescriptions for home oxygen therapy as durable medical equipment.  Many of these rules also consider oxygen therapy as a supplement for COPD type disorders… Not Cluster Headaches. 

Most private insurance companies recognize cluster headache and the use of oxygen therapy as a valid abortive, others assume the home oxygen and equipment will be used as an oxygen supplement to treat COPD and not as a therapeutic abortive for the pain of cluster headache attacks.   Medicare will not cover oxygen therapy for beneficiaries suffering from cluster headaches! (This CMS policy is screwed up as Hogan’s Goat and we tried unsuccessfully in 2010 to have this coverage determination modified to allow oxygen therapy for the treatment of senior citizens on Medicare who suffer from cluster headache.  This battle isn't over, but it’s going to take a while.)

Complying with the requirement for oxygen saturation testing will prove fruitless if you only have cluster headaches and no other respiratory or circulatory disorders as any tests of your oxygen levels done by arterial blood gas or oximetry will result in normal readings.  If your medical insurance company follow the CMS rules, that could be grounds for them refuse to cover your claims for oxygen therapy.  Accordingly, it is very important that your physician’s diagnosis is clearly stated as “cluster headaches” as this will alleviate the requirement for oxygen saturation testing.

These rules require a prescription for oxygen therapy and a physician's certification of medical necessity.  A physician's certification of medical necessity for cluster headache sufferers who need oxygen therapy must include the ICD-9 Diagnosis Codes for Episodic or Chronic Cluster Headaches and estimated length of need in months.  Figure 1 illustrates part of a sample CMS-484 with entries for the following ICD-9 Diagnosis codes and suggested length of need for each:

339.01 – Episodic cluster headache Est. Length of Need – 12 months, or 
339.02 – Chronic cluster headache - Est. Length of Need – 99 months

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CMS 484-Oxygen ICD-9 Codes for Episodic or Chronic Cluster Headaches

It is also important that your physician provides a narrative description of the type of Oxygen DME to be used in your prescription if required.  This is because Section C of the CMS-484 – Oxygen form will be completed by the home oxygen supplier.  If your physician fails to specify the type of oxygen DME you need, the home oxygen supplier will describe the equipment they want to offer and that may not be what you want or need.

The suggested narrative description your physician should use in your prescription to describe the oxygen equipment you will use follows:

1.      Compressed Oxygen Cylinders (Stationary) for Home Use – Aluminum M or M60 size cylinders with cylinder cart preferred.  (Minimum Qty 3 if you have at least three cluster headache attacks a day/24 hrs.)

2.      0-15 Liter/Minute regulator for use with M or M60 size oxygen cylinders - Single Stage Flowmeter type regulator preferred

3.      Compressed E-size Portable Oxygen Cylinders cylinder with cart for Work and/or Local Travel. (Minimum Qty 2)

4.      0-15 Liter/minute Click Style Oxygen Regulator for use with E-size Portable Oxygen cylinders.

5.      Non-Rebreathing Oxygen Mask (Qty 2).

Notes:
1.      If you’re having 3 attacks a day/24 hours you’ll need a minimum of 4 of the M-size Aluminum or Steel/Cast Iron Oxygen Cylinders to last one month.
2.      The flowmeter type regulator is capable of flow rates well above 15 liters/minute
3.      Keep track of your oxygen usage over the first two weeks and re-order oxygen refills accordingly
4.      Humidifiers are not recommended with flow rates above 25 liters/minute but they will work at flow rates of 25 liters/minute and below.
5.      If you are a Do-It-Yourself type or mechanically inclined, there are Transfill Adapters available to refill the E-size cylinders.

In order to avoid needless delays and ensure your claims for insurance coverage are approved so most home care oxygen providers will honor the prescription for oxygen therapy, it’s very important that when you see your doctor or neurologist about a prescription for oxygen therapy that it is written to comply with existing rules stated in the Medicare Carriers Manual, Part 3, §4105.5 shown below.

“A prescription written by the patient's attending physician who has recently examined the patient (normally within a month of the start of therapy) and must specify:

•      A diagnosis of the disease requiring home use of oxygen – “Cluster Headache”;
•      The oxygen flow rate – “15 liters/minute”; and
•      An estimate of the frequency, duration of use (e.g., 15 liters per minute, 20 minutes per hour, 12 hours per day), and duration of need (e.g., 6 months or lifetime).”

As you can see, it is also imperative that the prescription specifically states “cluster headaches” as the medical condition being treated.  Without this statement, you’re in for a heap of trouble.

Your prescription for oxygen therapy should look like the following if you’re getting your first prescription for oxygen therapy, or if you’re already using oxygen therapy and want to get a higher flow rate:

[b]"Oxygen therapy with a non-rebreathing mask as an abortive for cluster headache pain.  Administer at onset of attacks at 12-15 liters per minute for up to 20 minutes per hour, up to 12 times per day. ”

Notes:

1.      Most prescriptions for oxygen therapy must be renewed every year.  Play it safe and have your physician add “Refills for one year” to the above prescription.
2.      Pulse oximetry and arterial blood oxygen are not required for approval of home oxygen for cluster headaches, but you may need a certificate of medical necessity (CMN) signed by your doctor.
3.      Have your physician specify M-size oxygen cylinders for home use and E-size portable oxygen cylinders for work and local travel.  These two types of oxygen cylinders require different types of oxygen regulators.
4.      Obtain a paper copy of this prescription for your records.  It will come in handy if you go on travel and need to order oxygen when you’re away from home.  If you don’t had a copy of the prescription, the monthly receipt from your home oxygen supplier will also work while you’re on travel as it provides proof you have a current prescription for oxygen.
5.      The prescription is written for a maximum flow rate of 15 liters/minute because that is the highest flow rate supported by clinical studies that medical insurance companies will cover.  Accordingly, that is the maximum flow rate most doctors and neurologists will prescribe.

Although you will need a higher flow rate, 15 liters/minute is far better than nothing and it will get you started.  Having said that, don’t be afraid to ask your doctor or neurologist about writing the prescription for 25 liters/minute insisting that this flow rate is perfectly safe and far more effective.  There’s a good reason to do this…

If your doctor or neurologist is willing to discuss higher flow rates with you, but is still understandably hesitant to prescribe a flow rate of 25 liters/minute, ask for the prescription to be written for a demand valve.  Prescribing a demand valve to administer your oxygen therapy alleviates the physician’s requirement to specify an oxygen flow rate.  If this line of reasoning works with your doctor or neurologist, your prescription for oxygen therapy with a demand valve should look like the following:

Oxygen therapy administered with a demand valve equipped with a facemask or mouthpiece as an abortive for cluster headache pain.  Administer at onset of attacks at normal respiration rates for up to 20 minutes per hour, up to 12 times per day.

Notes:

1.      Most prescriptions for oxygen therapy must be renewed every year.  Play it safe and have your physician add “Refills as needed for one year” to the above prescription.
2.      Pulse oximetry and arterial blood oxygen are not required for approval of home oxygen for cluster headaches.
3.      Have your physician specify M-size oxygen cylinders for home use and E-size oxygen cylinders for work and local travel.
4.      Obtain a paper copy of this prescription for your records.  It will come in handy if you go on travel and need to order oxygen when you’re away from home.  If you don’t had a copy of the prescription, the monthly receipt from your home oxygen supplier will also work while you’re on travel as it provides proof you have a current prescription for oxygen.
5.      Demand Valve systems are expensive.   A complete system can run from $500 to $700 depending on the components and shipping costs, but it may be possible to have some or most of this cost covered as durable medical equipment by medical insurance depending on the type of insurance you hold.

Most physicians will want to see you more frequently than once a year to review the efficacy of prescribed treatments, so if oxygen therapy is working well for you remember to call your doctor before the year is up to have the Rx renewed.  In most cases your physician can do this electronically or by fax to your home oxygen provider without need for an appointment.

Durable Medical Equipment All components of your oxygen therapy system are considered durable medical equipment including oxygen supplies.  The prescription needs to specify the type of oxygen breathing equipment to be used.  The recommended prescription above already states “non-rebreathing mask” to avoid being sent a nose cannula that is useless for at higher oxygen flow rates needed for cluster headaches. The available oxygen delivery systems are available as gaseous oxygen (GOX), liquid oxygen (LOX), and oxygen concentrators.

Ask your doctor or neurologist to specify GOX in your prescription.  It’s normally delivered for home use in large oxygen cylinders (M60, M, H, and K-sizes in the US) and the smaller portable oxygen cylinders such as the E-size for local travel and work.  It is completely permissible for your physician to specify the size oxygen cylinders as part of your prescription.  The following diagnostic and treatment codes will come in handy as most medical insurance companies require them:

Diagnostic and Treatment Codes

  Diagnostic Codes

    ICD-9-CM Diagnosis Codes:
        Episodic Cluster Headaches – 339.01
        Chronic Cluster Headaches  – 339.02

   ICHD-II Codes:
       Episodic Cluster Headaches – 3.1.1
       Chronic Cluster Headaches  – 3.1.2

   ICD-10 NA Codes:
       Episodic Cluster Headaches – G44.01
       Chronic Cluster Headaches  – G44.02

The following codes for treatment and procedures are applicable to most private medical insurance guidelines are included below for informational purposes.  Inclusion or exclusion of a procedure, diagnosis or device code(s) does not constitute or imply member coverage or provider reimbursement policy.  Refer to your medical insurance contract benefits in effect at the time of service to determine coverage or non-coverage of these services as it applies to an individual member. If your medical insurance coverage

    Healthcare Common Procedure Coding System (HCPCS) Codes

        Equipment:
           E0424-E0425 Stationary compressed gaseous oxygen system
           E0430-E0431 Portable gaseous oxygen system

       Contents:
          E0441 Oxygen contents, gaseous, 1 month’s supply = 1 unit

      Modifiers:
         QG - Prescribed amount of oxygen is greater than four liters per minute (LPM)

The advantage of using GOX comes into play when you want to use regulators capable of higher flow rates than the 15 liters/minute that most home oxygen services have on hand.  There are several constant flow regulators that deliver up to a flow rate of 25 liters/minute and a few that go higher.   Demand valves are similar to a SCUBA regulator and very easy to use.  They deliver oxygen on demand as soon as you start to inhale. The harder you inhale, the more oxygen they deliver.  As there’s no flow meter on a demand valve, you control the oxygen dosage with your respiration rate and this may make it easier for your physician.

GOX is usually the most cost effective in terms of cost/abort if you use the larger home size cylinders.   If you’re having more than three attacks a day/24 hours, order at least two M-size cylinders and at least a three-day supply of the E-size.  The average abort will consume from 125 to 200 liters (average volume 160 liters) of oxygen so an E-size oxygen cylinder that holds 700 liters of oxygen will be good for 3 to 4 aborts.  The M-size oxygen cylinder holds 3995 liters so should be good for 20 to 25 aborts.  Once you’ve established a usage rate, you can order refills accordingly.  It’s no fun running out of oxygen on a Friday evening, as most home medical providers don’t deliver on weekends so plan ahead.

Liquid oxygen (LOX) systems are normally delivered in a large reservoir holding 20 to 40 liters of LOX along with a smaller portable 1-liter dispenser.  LOX expands at a ratio of 860:1 so a 1-liter dispenser will deliver up to 860 liters of gaseous oxygen capable of 4 to 5 aborts. Home LOX system can only deliver a little over 15 liters/minute without freezing up.

Oxygen concentrators are basically useless if you want a flow rate greater than 15 liters/minute that supports hyperventilation to abort cluster headache attacks, as only a few models are capable of 15 liters/minute and none go to 25 liters/minute.

LOX systems and oxygen concentrators will work in a pinch if GOX is not available.  Again, oxygen therapy at 15 liters/minute is better than nothing. 

As a side note, you can always use a clean 40-gallon Hefty trash bag for a reservoir bag.  Fold and seal the open end with duck tape then cut a small piece off the corner on the closed end and tape it to the non-rebreathing mask manifold.  Once you’ve done this, fill the hefty bag completely from the LOX dispenser or concentrator, then breathe at a respiration rate as fast as needed to hyperventilate.  This works best if you use the “T” manifold from the O₂PTIMASK as you can put a cork in either end after filling the Hefty reservoir bag ahead of time.   You might want hang the filled bag out a window or on the back porch as a safety consideration.

You also need to be aware that some home medical oxygen suppliers will try to pressure you into accepting LOX or an oxygen concentrator system even though the Rx may specify GOX.  They try this because they can charge your insurance company more each month for LOX or an oxygen concentrator than they could with GOX cylinders.  If they try to pull this stunt on you, just tell them “No Thanks.  It is against the law for a home oxygen supplier to change a physician’s prescription…  If you can’t fill my prescription as written, I’m taking my prescription and order for oxygen to another supplier.”   

Dollars and Sense of Oxygen Therapy

It’s always wise to shop around for your home oxygen service to see who has the best rates even if your insurance company is covering most if not all of the expense.  You may need to pay a percentage of the total monthly cost as “Co-Pay” so getting the best rates on refills and equipment rental is important.  You can save a considerable amount each year if you buy or have your insurance company buy the oxygen regulator, demand valve if you use one, and the caddy cart for the E-size cylinders if you use them.  Medicare and the medical insurance companies consider these items “Durable Medical Equipment”(DME), and some medical insurance companies have provisions for coverage if you want to buy this equipment instead of renting. 

The cost of your oxygen consumable (refills) is directly dependent on the size oxygen cylinder you use.  The average cost of a refill for the E-size cylinder containing 708 liters of oxygen is $20 and it’s $30 for an M-size cylinder containing 3995 liters of oxygen.  As indicated earlier, we consume on average, 160 liters/abort if using a flow rate that supports hyperventilation.  That works out to a cost/abort using an E-size cylinder of $5, and if you used an M-size cylinder the cost/abort is $1.20. 

At an average of 4 cluster headache attacks a day, a chronic cluster headache sufferer consumes $1,752 worth of oxygen a year if using M-size cylinders and $7,300 a year if using E-size cylinders.  That works out to a savings of $5,548 if you switch from E-size cylinders to M-size cylinders. Obviously that isn’t always possible for folks that need portable oxygen at work or who do a lot of local travel.  It is a great selling point to your insurance company if you want them to buy you a demand valve.  Remember, if you’re 65 or older, on Medicare and have a Medigap Policy —(Medicare Supplement Insurance sold by private insurance companies to fill “gaps” in Original Medicare Coverage), you will still likely pay 20% of your oxygen refill expense..

Medicaid Coverage for Oxygen Supplies and DME

The monthly rental payments to the supplier cover not only your oxygen equipment, but also any supplies and accessories such as tubing non-rebreathing mask, or a mouthpiece, oxygen contents, maintenance, servicing and repairs.  As a medical insurance, Medicare pays 80% of the rental amount, and the person with Medicare is responsible for any unpaid Part B deductible, and the remaining 20% of the rental amount.

If you want to buy your own regulator you can do so and save on rental expenses, but Medicaid and some medical insurance companies will not reimburse you for the lump sum purchase of oxygen DME. The most recent CMS rules for oxygen equipment indicate Medicare will only pay for DME on a rental basis up to a 36-month rental period per the latest legislation effective 1 January 2009.  Under the new law, the rental payments will end after 36 months, but the supplier continues to own the equipment. The new law then requires your supplier to provide the oxygen equipment and related supplies for 2 additional years (5 years total), as long as oxygen is still medically necessary.

At the end of the 5-year period, your supplier’s obligation to continue furnishing your oxygen and oxygen equipment ends, and you may elect to obtain replacement equipment from any supplier. A new 36-month payment period and 5-year supplier obligation period start once the old 5-year period ends and the new oxygen and oxygen equipment you require is furnished.

Playing Hard Ball When Calling Your Medical Insurance Company

The following is a modified version of an article from a 2007 OUCH Newsletter

1. Record your conversation with them. Be upfront with them that they are being recorded. Be sure to have your policy in front of you, and know it. They may quote clauses in it that do not exist. If they quote from it let them know it is in front of you and ask exactly where in the policy they are quoting.

2. Ask for names when talking to representatives, both first and last. The insurance companies may make statements that turn out not to be true when they deny you your oxygen therapy. In my opinion this is their Achilles’ heel.  In my experience they do not want to give their full names out, if they don’t give you their name ask for their supervisor, or their supervisor’s supervisor.

3. One of the first statements that they may make is to site the fact that Medicare does not cover oxygen therapy for cluster headaches and that insurance companies are allowed to use this rule.  Unless you are on Medicare and have no secondary medical insurance, this rule may not apply to you.

4. They may also tell you that hyperbaric oxygen therapy is not covered.  While this is true, your doctor has prescribed normobaric oxygen therapy at one atmosphere barometric pressure and this method of oxygen therapy is covered.  If they quote from the FDA Legend they are making the implication that limiting oxygen therapy it is a federal regulation. This is not the case; this is where asking for the representative’s name is important. Would you want to be on the record quoting non-existing federal regulations to deny someone a lawfully prescribed medication?

5. Have your medical insurance policy/plan booklet in front of you when you call. If they tell you the limits are in your policy, tell them you have it in front of you, and ask them exactly where it is.

6. By changing or failing to honor your attending physician's orders as expressed in the prescription he/she wrote, they are practicing medicine without a license. When they tell you they have a review panel that includes a physician, the physician on their panel is committing malpractice since he's changing your attending physician's orders as expressed in the prescription when he's never examined you. Ask for that physicians name and credentials, and request to speak to him directly.

7. Another common mistake made by the insurance companies is that they are treating you as a COPD sufferer.  You may have to point out several times that you do not suffer from COPD and your blood oxygen levels are fine, but you do suffer from cluster headaches. Treating them as one and the same is a medical mistake.

9.  Remember that you are your own best advocate.  Be assertive yet polite. When given an untrue statement, tell them that it is untrue and ask from whom they are quoting and ask to speak to that person directly.  Ask them if they are sure they want to be on the record quoting that statement.  Remind them that the monthly cost of coverage for triptan injections runs from $680 to $2550 and that a month’s supply (4 M-size Oxygen cylinders) costs less than $160.  Also remind them of the cost of an ER visit, mention to them that you would have no choice but to go to the ER for the attacks. 

10. If you are still not getting any satisfaction, ask for the form and web link containing the procedures for challenge a coverage limitation.  They are required by law to provide you with this information.  Also ask for the phone number for the National Association of Insurance Commissioners covering your insurance company.  You can find this at the following link if they can’t come up with a number:

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Review

1.      Oxygen flow rates of 15 liters/minute and below will take longer to affect a cluster headache abort and may not be effective at higher Kip-levels.
2.      Oxygen flows rates of 25 liters/minute and above support hyperventilation, and are very effective in aborting cluster headaches with more rapid aborts.
3.      High flow rate oxygen therapy is very safe with no real or lasting side effects.   That’s more than you can say for any of the preventative, transitional, or abortive medications for cluster headaches
4.      Talk with your doctor or neurologist and to make sure your prescription for oxygen therapy is written properly to prevent problems with medical insurance or Medicaid coverage.  Use the samples below in Figure 2.
5.      If your doctor or neurologist is unwilling to write your oxygen therapy prescription for 25 liters/minute, ask for a demand valve.
6.      If your doctor will only prescribe your oxygen therapy at 15 liters/minute and won’t prescribe a demand valve, plan on buying your own oxygen regulator.  You can purchase them over the Internet without a prescription.
7.      If you get the prescription, but your insurance company refuses coverage to pay for home oxygen… Play Hard Ball!

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Figure 2. Sample Oxygen Therapy Prescriptions [/c]

Download and print the following links for your doctor or neurologist when you ask for a prescription for oxygen therapy:

Standards of Care and Sample Prescriptions for Cluster Headache
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Home Oxygen Therapy Insurance Guideline #: CG-DME-18
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CMS-484-Oxygen
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If you still have problems or questions, please shoot me a PM.

Take care,

V/R, Batch