|The Testicular Cancer Resource Center|
As with any medical condition, treatment has a price...the intent of this page is to:
-- Inform you of the possible costs relating to Testicular Cancer and
-- Provide information to help you PAY for those costs, too!
Keep in mind, however, that testicular cancer is real cancer. Putting off a visit to the doctor because of problems with insurance coverage is not a good idea. There are ways to deal with this issue that are more practical than just hoping it will go away on its own...
To start out, here is some advice we received from a very respected doctor in the TC field:
"The first thing is don't ignore it just because you don't have insurance. Remember early stage testis cancer is a whole lot cheaper to take care of than late stage testis cancer. Second, an exam by a physician shouldn't cost too much (less than $100). You also can negotiate a payment schedule with most physicians, and remember, most people with testis cancer symptoms do not have testis cancer. Thirdly, there is almost always health care access through public hospitals, county clinics, VAs for vets etc. You can always call the county health office and they can direct you."
Here is a common question:
If you were a young guy with no insurance and you felt a lump on your testicle, what would you do? Given the pre-existing condition rules, will such a guy ever be able to get coverage? Will hospitals turn him away? Are there places he can go that will treat him in spite of insurance issues?
TCRC's Resident Insurance/HMO Advice Guy said:
"First, given pre-existing conditions, the only way to get coverage is through obtaining a job with an employer which is going through its annual "open enrollment" period. The insurance company cannot "health screen" each applicant during this time and must accept all comers, regardless of health history. (At least in Oregon.) Likewise, if an employer is signing up with a new insurance company, there will be no individual screening of employees during initial enrollment.
If I were the young man in question, I would show up in an emergency room of a large hospital, complaining of pain and a lump. I believe they would not turn him away due to lack of insurance or ability to pay. This varies from state to state and hospital to hospital. But most hospitals are obligated to take indigent patients under terms of loans, grants, and tax breaks which they have received historically. It is a tough subject and full of uncertainty. Local non-profit organizations would probably have insight into the best hospitals and the best approach to take. Also, hospitals affiliated with religious orders will be the most receptive to "unreimbursed care."
The following information is taken from a paper called Cost and Risk Benefit in the Management of Clinical Stage II Nonseminomatous Testicular Tumors (with many thanks to Scott Kinkade):
Ref: Jack Baniel MD, Bruce J Roth MD, Richard S Foster MD, and John P Donohue MD out of Indiana University in CANCER June 15, 1995 vol 75, No 12 p2897-2903.
This paper discusses side effects, survival and costs of different treatments. They have a table that lists Avg Costs in Management of Testis Cancer Patients. (1992 IU med ctr prices)
They break it down several different ways, but basically for the procedure plus follow-up they estimate:
My orchiectomy cost (in 1992) $2459.58. That was for one night in the hospital.
An oncologist visit goes for roughly $60, though the initial visit may be more. Also, doctors at major medical centers like Sloan Kettering may charge much more.
My surveillance costs are roughly $400 per visit for the blood test, chest Xray and radiologist fees. I do have a couple extra tests done, so maybe subtract $50.
A CT Scan (abdominal and pelvic w/wo contrast) runs about $2000 for the scans and radiologist fees. That price is higher than when I started 4 years ago. Some doctors may decide to skip the pelvic scan. I tried to convince my oncologist it wasn't necessary a couple of years ago but he wouldn't agree.
The first year of surveillance, I managed to hit the maximum out of pocket expenses for my insurance, and that worked out to about $12000 (not including the operation).
All these expenses were incurred at a reasonably large hospital in a major suburb of Chicago. Expenses in some of the richer suburbs or downtown would have been higher.
Let's see, surgery, radiation treatments, anti-nausea drugs, checkups, a couple of CT scans in the first year, about $11,000. Thankfully I was mostly insured.
If I remember right, the hospital "visit" was around $10,000 to $11,000. That did not include the docs fee - just the ER room, the drugs and the CT scan.
I just got the last bill for my husband's RPLND at Memorial Sloan Kettering (MSKCC). The total, including the surgeon, hospital and all the different auxilliary personnel, came to $29,584.12. This was in January 2001.
RPLND expenses at Indiana Univ. Medical Center:
Operating Room Services:
Total of hospital fees: $7700.35
Total of doctor's fees: $5150.00
In comparison, fees from the Hospital of the University of Pennsylvania (HUP), Philadelphia:
Oh, yeah, I don't know if you're taking this information as well but HUP parking runs about $8.00 (3 - 10 hours ) every time we go. Unfortunately, we can't get our HMO to cover this as well!
Lodging, Food and Transportation (Plane and car and parking!) expenses for going to Indianapolis (from Philadelphia) came to around $1500.00 for 10 days for the two of us, out of which our insurance paid $1370.00 leaving us with only $130 in out-of-pocket expenses. Cool, huh?! I'm still pleasantly amazed every time I look at our finances for that trip.
* If you are in an HMO, you may have a hard time getting a second opinion from a doctor outside of the HMO (or PPO). Talk to your primary care physician and urologist/oncologist about this. My doctors told the HMO people that no one inside the network had anything intelligent to add with regard to a second opinion. They insisted that the HMO pay for me to get a second opinion from Indiana University.
* A pathology second opinion doesn't cost that much. If the insurance wont pay for it, do it yourself.
* If you choose to travel out of town for medical treatment, and those travel expenses are not reimbursed by your insurance, then they can be claimed on your tax return - however, you have to either have a LOT of expenses or a small income to make this work. Ditto for paying things on your own.
* I believe a lot of insurance plans have a yearly maximum out of pocket allowance. When I went through this (after I got out of the HMO) it was $2500 + deductible. If this is true for you, and you also have a plan that pays 80% in network but only 50% out of network, then don't worry about it. If you have RPLND or Chemo, then you'll hit the maximum either way so go wherever the care is best.
Bruce sent in this HMO advice:
1. Be thoroughly familiar with the text of your existing policy coverage. Make sure you have *all* supplemental materials.
2. Keep a log by the phone; always note date and time of call and general gist of what was said.
3. ALWAYS get the names, both first and last, and the direct phone line of all persons with whom you talk.
4. Be respectful to receptionists, but always ask to speak to someone who is empowered to make a decision.
5. Request the names of ALL persons involved in the decision, including any so-called "medical advisors".
6. Demand all decision in writing, with full and official explanations of definitions (e.g., of terms like "experimental").
7. If you are covered by a union, immediately contact your union benefits person. In our union (an affiliate of AFT) at least, the benefits person had multiple experiences dealing with insurance problems.
8. Obtain the name(s), address, and phone numbers of any regulatory agencies or professional organizations that have jurisdiction over HMO's in your area.
9. Inform the HMO that you are going to your union and will not hesitate to contact public officials and the regulatory agencies that may have jurisdiction over them. It was emphasized to me that, as HMO's become more and more competitive, the prospect of "bad PR" is something they wish to avoid like the plague. Unions (and employers) contract with health providers, and HMO's do not wish to lose these large volume accounts.
10. Identify the appropriate person in the business office of your local doctor or treatment center. Work closely with that person. It is in their interest to work with you.
11. HMO's are used to passive consumers. Be as proactive as you can, as your time and strength allow. If possible, assign "insurance duty" to a feisty support person! My spouse was a very effective "bad guy". (It also allowed him to feel that he was participating in the overall strategy...)
For more information on the subject, check out these links!