How does everyone handle insurance with this disease? I know my costs will be about $160,000 annually with the medications I am on. I am three years out to qualify for Medicare, and have continued working to keep my insurance. I know Cobra will cover half of that. I am drained by the end of each day as I am a plant manager in a high paced environment. I only go to work now for the insurance and it shows in my motivation. I do not want to put my faith in the political unrest in Washington to keep ACA. Any ideas so i can enjoy my days while my health is still good? Thanks!
Insurance question: How does everyone... - Advanced Prostate...
Insurance question
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IndyGolfer
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IndyGolfer,
I am also away from Medicare by 4 years. I m 62. I have worried about this cost too. I have come to following ideas.
(1) Take a hard look at your meds...and see if there are cheaper options.. either generic or
patient assistance discounts etc. are available.
(2) Look overseas to buy meds. Some one told me that Zytica can be bought in India for about $100 a month. Same may be true for other expensive meds.
(3) Emphatically follow plant based anti-inflammatory foods and OTC supplements plus exercise etc to keep control of disease and prevent complications.
(4) Keep your boss/supervisors happy and be nice and polite to prevent conflict and job loss.
With good and smart planning and knowledge, the cost can be reduced from $160000 a year to less than $50000.
The goal is to kick the can for next 3 to 4 years until medicare is in your hands.
I don’t understand why your costs are so high when you have insurance. Or are you estimating the costs without. I was self employed and had a commercial Blue Cross policy. Once I hit my 5k deductible I paid nothing more. For Zytiga and Xtandi I paid zero. Are employers policies that bad? Sorry I’ve been out of the employee loop for many years. 12/1 I do transition to Medicare which I know works well except where medications are needed especially the tier 4 and tier 5 drugs. Maybe Medicare should be an option for younger people who need it.
Yes I currently have employer sponsored insurance, which is why I am still at work, With my portion of the premium, out of pocket max, and co pays, I pay $15,000 annually now out of the $160,000 yearly cost.
I'm on Medicare A, B+supplement, and D. If you add my Medicare costs including the supplement, Part D, and co-pays for various medications (including Zytiga, by far the most expensive) through the 3 Part D phases, I'm paying over$12,000 per year. So unless things change a lot, you aren't going to get much out-of-pocket $ relief when you qualify for Medicare
Has your medical team looked for grants and help from the drug companies? Or is your portfolio too large to be considered? Regardless of portfolio it is still obscene what the drug companies collect before they actually come after us...Blue Skies
Have you looked into a Medicare advantage plan? Some have an out of pocket cap of $2,900.
Out of pocket max in advantage plans does NOT include meds....that’s the unfortunate catch and why medicare is not the answer. Best route I’ve seen is to buy overseas if you can’t get on a patient assistance program through the manufacturer..... even then when you start moving away from the commonly prescribed drugs you have procurement probs . When on Medicare best scenario is to stay with injectibles and/or IV which are covered under part B.....need a Medigap plan to keep even this affordable.
Beware of Medicare Advantage Plans! They limit you to networks and the doctor you want to see may not be in their network. Most importantly, if you want to transfer back to traditional Medicare, you will be medically underwritten for a Medicare supplemental policy, and you will very likely be denied coverage.
No prostate cancer patient should ever go near a Medicare Advantage Plans.
There is a reason they provide all those free benefits (that cost them very little) and don't charge a real premium.
They are cutting corners on high cost patients and conditions.
If something sounds too good to be true, it probably is.
Can you get into Medicaid ? What stage is your cancer ?, Your prognosis ?
It is stage 4 cancer, in lymph nodes, but currently controlled by the meds. Zytiga and Lupron are the fist treatment I have had so I have a lot of options once this fails. I do not know Medicaid as I have always had employer sponsored insurance. I checked disability with Social security, and that is a two year wait for Medicare once approved.
You can not get Medicaid unless you become dirt poor. If you are totally disabled and unable to work you can get medicare on fast track ..in 2 or 3 months.
Even if you get on Medicare before 65 I don’t think you can get a supplemental policy. If you’re taking Zytiga a plan D would be critical. There may be other ways but I’m not sure. Maybe someone can offer some insight.
What treatments have you been on and what treatments are you currently on? There is financial help for drugs and treatments.
I have had the robotic surgery with hope of a cure, but it did not. First treatment started six months ago on Lupron shot every 3 months, and Zytiga daily. Working well so far. Thought I could last it out at work until Cobra would bridge me over to Medicare,. After 6 months of treatment, I need to come up with another plan for my sanity. Was all set to retire when the cancer was found, so I think my mindset is still in retirement mode.
Has your doctor contacted Jannson to see if you qualify for assistance for zytiga? I am assuming that you are about 62 - 65. Have you crunched the numbers to see if you can do better on Medicare?
Since my insurance was paying for almost everything, we have not done that. The dr. did help with the genetic testing with Guardant Health and Foundation Medicine. Maybe a trip to social security is next for me to see what my options are for medicare. My income has been too much to qualify for other programs.
have you tried social security disability. My husband had the surgery, some complications such as a dvt after surgery, was put on low blood thinner, and is currently on ADT for a year now. so he applied. We did hire a lawyer who specializes in it, and after 3 months, he was approved. We live in Florida.
I would like to advise you to contact a health insurance expert to evaluate an individual plan. Unless, you know what your options now, I don't think you can evaluate your options. Every locality is different. No one can tell you. I helped a friend evaluate options for 2020. He has a child, doing well, that had a brain tumor at 4 years old and has ongoing medical costs. His wife has some issues now. His company provide him a policy with a $15,000 deductible and his share of the premium is $1200 per month. $30,000 out of pocket before copays. (less a little because the monthly employee contribution is pretax). He is better off buying his own insurance. At any rate, i suggest you get some help on the health insurance decision. I don't know what your insurance is but, it is best not to assume anything and invest time to find out what the options are. my experience is Cobra does not provide the same benefit and cost as the company plan in many instances. Run the numbers thouroughly so you know for sure the 3 years of working is worth it.
investopedia.com/insurance/... The GOP and Trump have cut the open enrollment period for the second year. Check this artical for your state's open enrollemnt times.
You can eliminate Lupron by having a simple surgery. It is permanent of course, but if you’re on Lupron for the duration, then that doesn’t matter. [Edit: removed unsupported comment.} Just a suggestion to explore with your doctors.
If all I was taking was Lupron, I would be happy to pay that. The Zytiga is the expensive one.
How do you know that doctors Never suggest orchiectomy? Very uninformed statement
Perhaps you're right, probably overstated it. If you have statistics or studies of how many urologists presently prescribe surgery vs. life-long Lupron shots, I would be very pleased to be corrected with evidence.
So, anecdotally, when was the last time you heard of someone having it done? It seems quite rare at best for those even on lifetime testosterone suppression. At least virtually no one mentions it on any of the PCa forums I'm on.
In any case, I still would suggest it as an option to consider.
I guess we guys consider it a manhood phenomenon..It is.
I was offered the orchiectomy but refused..
I wish I knew some statistics. I have read on this forum of an occasional orchiectomy..But Rarely.l
Take care..
My husband was never "offered" orchiectomy. He was discouraged from it after avoiding ADT for years. We had decided on orchiectomy but were discouraged from it by the MO doc who commented that it was somewhat "barbaric" to even consider that.
A few years later husband had orchiectomy and has not missed the chemical castration injections one bit. It was a pain scheduling our lives around the injections when we wanted to travel, etc. Each to his own.
Agree. Some medical specialists who have not been in the operating room since med school may look at relatively non risky prudent surgical procedure as barbaric. Glad you found a surgeon who took care of your husband.
Best to you.
I'm on Diphereline for ADT, I will be having Surgery this Wed, not a full Orchiectomy, just to cut the lines.
I pay 150 Euros monthly for single payer Gov insurance and covers it ALL my treatments.
I do pay all my own prescription drugs but after I've paid the first 300 Euros it's discounted 98% for 12 months (ADT, Diphereline would normally be 150 Euros per shot here) my total prescription costs for 2019 was 700Euros, I'm taking a lot of different drugs, including Opioids for pain.
But you will still be on ADT form of meds, did they indicate this will be the case after the surgery ?
Yes I will continue to be on Diphereline and they also started me on Casodex. I'm not sure why they're doing this i.e. started the Casodex because the PSA is stable and very low. I didn't pick up on what he had prescribed until after our meeting so haven't been able to ask.
I assume because it was such a high PSA and the cancer had advanced into the Marrow in my Femurs they're trying to cover all bases with the Surgery and Casodex. I will ask the Urologist when I go in for Surgery on Wed.
Had the snip/snip surgery. Off lupron for life. Worked additional year and a half after planned retirement and postponed move to retirement home my wife and I had purchased for three years. Hope you can figure a way to get out sooner. Med costs suck but I was able to transfer most of mine to VA., Best of luck to you.
Did your psa stay low, actually thinking of putting it to the oc, I am 68 been on lupron for 2 years.
Stayed low. 18 mo. after surgery still at 0.120. Dropped for an additional 6 mo. after surgery, on 1/2 dose of Xtandi (80 mg /day).
If you had the snip snip and your psa is less than 1 why would you still be on ADT to lower it further. So even with the surgery then you still have to be on meds ? So maybe the surgery is not worth it, did the shrinkage go away and things went back to normal ? The oc said that at the end of the 3 month the psa goes up then with the new shot it drops back down, I have no symptoms like I had 2 years ago.
After snip/snip nothing to regain size, but not on luprin for life with G-9, fast growing, invasive, aggressive and incurable Pca. No cardio side effects to look forward to.
Zytiga can be had in a generic form, much cheaper and I'm surprised your insurance company has not insisted that you use the generic version. Even cheaper online versions are available from suppliers in India...Stick with a well-known and respected pharmaceutical company..
You might want to contact an independent insurance broker who has experience in all types of insurance. You could get an idea of what policies are available for you to buy on the individual market or through the exchange. Granted, if you left your job COBRA may be the best way to go for 18 months, but you could get an idea of what you might have to pay for an individual policy for those 18 months after COBRA and before you turn 65. Look into SS disability too.
I have been buying meds from India for a decade or more, esp. when my meds were brand-name only and utterly unaffordable. The company I deal with now doesn't have Zytiga, but my point is that at least some Indian pharmacies can indeed be trusted, I have never experienced credit card fraud (though I sure have at Home Depot, Target, Neiman Marcus, etc. etc. etc.), and a great many Big Pharma companies contract with Indian companies to make their drugs there - as an example, my buproprion I get from CVS is made by GlaxoSmithKlein in India.
here are a few links just from this site:
healthunlocked.com/advanced...
Many if not most ppl in Australia think the US medical system is broken because the doctors and drug companies charge such high prices and especially for desperate cancer patient treatments.
Suppose someone begins paying 10% of an annual wage for medical insurance from time when working life starts, If real wages start at say $50,000 pa, then insurance is $5,000pa, and for 45 years of work, total insurance premium payments are $225,000. Now the amount able to be paid for treatment of sickness is about maybe $185,000, because the profit of insurance companies and their taxes is maybe $40,000 per patient. that amount might be enough to
give big enough income to whoever runs companies because maybe 1 company person deals with 10 patients.
Anyway, If cancer treatments are $165,000 a year for a patient, then the way companies work is unsustainable because for them the accumulated income $$$$ from a patient must always much exceed the outgoing $$$$.
So the insurance paperwork usually includes a huge number of things which are not covered by insurance.
Private health insurance in Australia does exist, but there is a declining amount of re-imbursement paid to those with ever increasing huge medical bills for treatment not covered by our Medicare.
I listened to a lady here in Australia explain on TV how she'd spent $1 million to stay alive while fighting breast cancer. She had to sell her house. Her treatment was not all available at public hospitals for free, and not covered by Medicare, or any insurance company.
So many young ppl are dropping out of having any medical insurance because they suspect a rip off. They have such low wages that saving is impossible especially if paying off a house loan. When they get old they may not have saved up say $200,000 for medical bills. This may be needed for illnesses in old age. Medicare could be dismantled by rabid but wealthy politicians, so ppl who have no savings just have to die earlier than those few who have saved up a huge amount. The rich get all the most expensive medical treatment easily. Fact is it may not be as good as what is available to anyone in the Medicare funded Public Hospitals where there are no staff needed to accept payments.
But I paid maybe usd $30,000 last year for Lu177 treatments and scans and none of that was available at my local big Public Hospital. Medicare paid nothing, and afaik, insurance company would not have because Lu177 is not yet fully approved.
I've never paid insurance premiums, so thus saved myself having to pay maybe $200,000 over a life of work. So I have not contributed to paying for those working in the insurance "industry" which many feel are greedy parasites.
Some ppl have said their insurance paid for all expenses, others have said they paid for little, and premiums are different and the policies are different, with much varied inclusions.
Medical insurance is a most confusing and vexatious issue for so many ppl.
Patrick Turner.
I'm not well informed about these things, but wonder if some of this information might be helpful.
Social Security Disability and Cancer | DisabilitySecrets
Try applying for disability I got it then Medicare kicks in.
Leo - Medicare doesn’t kick in for 2 years after you become disabled.
My Doctor and his team found me assistance through various grants that are available to us. You could try applying for them too.
I started reading on this last night after the original post and somewhere I read that Medicare kicks in immediately with a stage 4 prostate cancer diagnosis. Is that not correct?
There is a two year waiting period from when you become disabled to when you become eligible for Medicare. In my case I used COBRA insurance through my previous employer until Medicare kicked in. Even with Medicare, it’s not a free ride, you still need to pay for part D coverage and a supplemental if you want to cover most of your costs thru insurance. Even then there’s still deductibles, copays and coverage gaps.
That’s why when politicians talk about Medicare for all as if it’s free healthcare it’s a joke, it still costs money.
Ed
My dad is stage 4 and on Zytiga. He’s on social security. He qualified for the drug free. Your issue is the same as mine. On Xtandi. $11.000 before insurance. Retired and on Medicare. Even with a supplement my cost is $657.00 per month after a $10k deductible. Medicare will not pay for it as it’s not administered by the doctor. Check into Medicaid to see if you can qualify after you are unemployed. This donut hole on drugs is awful. Hang in there brother
1. If you are stage 4 and the doctor will put that on the notes of one of your followups, you can walk into a medicare office and apply for medicare disability. You must not quit or cut back to part time and say you cant work full time because of cancer. Under disability, I think you can earn up to 800 monthly and still get on disability. If you are stage 4, its time to spend more time managing your cancer and enjoying the years you have of a shortened life span.
2. A supplemental plan under medicare will help pay the 20% on dr visits and scans and tests.
3. A good Medicare part D plan such as United Healthcare RX Saver Plus will put you into the catastrophic level on the first bottle of Zytiga and after that you only pay a 5% copay for all drugs after that.
4. I got a grant for Zytiga from Healthwell and it is paying all my Zytiga copays, but must be on medicare and be low income to get that grant. A social worker helped me find charitable organizations that could help me pay my meds.
Correction. My grant came from PAN Foundation.
If you go on medicare disability, medicare rules say you cant earn more than $1,170 monthly from employment to keep disability status. I temporarily went on state disability for 2 years, a California program, before going on medicare disability. That CA program gave almost a full salary for 2 years by combining the state disability payment with the Kaiser company subsidized amount. I worked for Kaiser for 20 years and had good insurance coverage. I decided to keep that Kaiser coverage as long as possible, so I extended it to the maximum of 36 months on disability with COBRA before medicare disability kicked in.
The us system indeed is a mess, but Medicare and a supplementary plan has done pretty well by me through diagnosis, radiation, Lupron. the key seems to be to make sure in the first place that the care provider “accepts Medicare assignment.” That means they can’t bill you anything more than what Medicare/supp pays.
Currently i’m on Zytiga by way of a phase 3 meds trial, through Fox Chase in Philadelphia, which is a national cancer center affiliated with a teaching hospital. The trial sponsor pays all the bills. There’s a directory of ongoing trials someplace on line, if you can qualify you’ll find your costs covered and yourself under closer observation than otherwise. On the downside, you can’t go chasing alternate treatments while on the trial.
If you’re on ADT ask your urologist about estradiol patches. Much cheaper and just as effective with much less side effects.
Hmm... Hey Indy, I hope that your still hitting them "long and straight"!
My dx was 14 months ago. Results: G9,stage 3, high PSA 28 (doubled really fast within a year) and no mets.
So far I've been on ADT (Casodex and Lupron and Zytiga, prednisone and Lupron since March 1). Had HDR Brachy (April 26th) and 25 days of IMRT ending July 8th. So far (knock wood) I feel great!
I'm about to turn 71 and my dear wife 70. For the last 6 years I have begged her to retire from teaching, so we could move from CT to Hilton Head (we had a 2nd home there for 20 years, our backyard had the champ tees for the Trent Jones in Palmetto Dunes.
Ironically, her refusal to retire has provided us with private health insurance (Anthem) and it has been a godsend!
Here are the expenses I've incurred since 1/1/19:
Here's how we've covered your 136 claims this year.
$425,717.97
Total Claims
YTD since Jan. 1, 2019
Plan Savings
$150,313
Your Responsibility
$5,058
My point is that you should run this by you company's insurance administrator for further guidance. However, I'm not sure that if you acknowledge your (our) condition, if it could jeopardize your job. I don't have a clue!
Maybe, other members of our forum can chime in and provide further clarification.
Best,
AJ
When you hit 65, look for a MediGap policy. It is more expensive than an HMO or PPO supplemental plan but it gives much more complete coverage. You will be elgible and can't be disqualified for having cancer if you elect to obtain the coverage as soon as you are able. Otherwise you will have to qualify and won't because of PC.
In less than 3 mos. I turn 65, and am looking into Medicare. I've decided on Medigap for reasons you outlined. Yet I've been told since I plan to continue to work, I can postpone Medicare Part B until I retire (say in a few years). If I do this, and show where I've held health insurance, I would not be subject to Medicare restrictions and thus disqualified due to PCa. This has been mentioned to me by more than one medicare specialist, yet I still wish to confirm.
IndyGolfer
Insurance is in fact and the annual expense to cover disease therapy has always been on my mind as well. I can only tell you my story and you can take from it what you will. Three years ago at 56 I was informed Stage IV PCa with mets - G9. For sure and without question the insurance coverage was not the first thing that came to mind but it was up close to the top. My insurance is one that costs $450/month with a $10,000 annual deductible and a $4000 out of pocket per year max. In the very beginning I was advised to sign up for SSDI and get an established date for medicare to start. If you qualify for SSDI then 24 months later medicare will kick in. I can remember back then I could not get my head around the fact that work for me was going to become more and more difficult and staying focused on running my business was going to be impossible. After all advanced cancer was going to take up all my time. This realization did not come until Feb of this year. Today I wish I would have taken the advise and signed up for SSDI in the beginning. In Feb after spend two plus years covering the office expenses and paying medical expense a good bit of my so-called retirement money has been used up and now forced to sell some stuff I would rather not sell. Life does change and a new normal does become true... not all bad just not what was planned during my prior cancer years. Finding ways to get some of the treatments covered without having an expense is part of the new normal and the part that takes time. Last year I was able to find a drug company that would cover my $10K out of pocket so my annual was cut in half. Not sure what this next year will bring as for expenses but working on coverage options and alternative drugs has a big roll in cancer care sorry to say (not for everyone but I would think most). I would be happy to chat about (ADT, Chemo, IMRT - Radiation, Liquid Biopsy, Provenge and 2nd line AR coverage/expenses) all of which are under my belt. At this time waiting for medicare to start - 16 months from now. Not sure what challenges this change will bring but like everything related to cancer working thru it is all on us..... Oh - closed my office after most of 30 years and today trying to find my new self and lifes purpose.
"LearnAll" has some good advice. Also, please be aware the entire medical system is at risk for adopting a stance where they feel overcharging is "justified". This was/is caused by the pharmaceutical corp's who regularly overcharge in the USA .... the Hospitals have caught on and many of these also have overcharging built into their fees. While the foreign purchase of medication is one solution, a call to your insurance company might be useful to see if they have suggestions .... I did this with a CT Scan a few years ago and they told me what a reasonable fee was and what portion was not covered (my copay) .... helped significantly when I relayed this info to the Hospital.
Since my cancer is Agent Orange presumptive the VA picks up all the freight. Personal cost = zip. However since it also could have been caught and should have been caught while it could have been dealt with - but wasn't because of their homicidal policy of stopping PSA testing at age 70 - I am out to cost those bastards in the med system as much as I can. I figure I'm over $250,000 and counting. Wish I could take some of your costs but not something the bean counters would sign off on.
From PAN: Medicare coverage kicks in for most SSDI recipients two years after the first month they are eligible for their monthly disability benefits. However, this doesn’t automatically mean that every person approved for SSDI must wait two years to get their Medicare coverage. The two-year Medicare waiting period generally gets calculated from the date of your SSDI entitlement (the date you are eligible to receive your monthly award). Normally, this is the date your disability began plus the five-month SSDI waiting period.
However, things get a little tricky depending on your disability onset date. Depending on how far back you became disabled, you may have met a good portion of the waiting period by the time you are approved for benefits. But, because Social Security only allows a maximum of 12 months of retroactive benefits, plus the 5-month waiting period for benefits, the earliest that you can become eligible for Medicare is one year after you apply for Social Security disability.
For instance, let’s pretend you became disabled in July 2016. Since there is a five-month waiting period, your Social Security Date of Entitlement would be in December of 2016. You didn’t apply for Social Security benefits as soon as you became disabled, so your application date was January 2017. You had to go through the appeals process as you were initially denied, but you were finally approved for benefits in September 2018 with an entitlement date of December 2016. Since it has been two years since your Date of Entitlement, you will start receiving Medicare benefits in December 2018.
But, if you recently become disabled and were approved with an entitlement date of August 2018, you would not become eligible to receive Medicare benefits until August 2020. There are exceptions to this rule if your disabling diagnosis is End Stage Renal Disease or Amyotrophic lateral sclerosis (ALS). People with these conditions receive expedited Medicare coverage.
"Medicare coverage kicks in for most SSDI recipients two years after the first month they are eligible for their monthly disability benefits. "
Cancer patients are automatically approved for Medicare coverage. Are they still subject to the 2 year delay?
I believe that individuals with advance cancer are quickly approved for SSDI not for Medicare.
thanks
I have read that 1x 250mg pill Zytiga with a fatty breakfast is as efficient as the 4x250 on an empty stomach. Read it first on a blog with prof. Potter who was one of the developers of the drug. Worth researching imo.
I have prostrate MC and am now sad to be an American, reading these stories is heart breaking. I feel the same way.
Universal health care must come to America. But not here today.
I am over 65/Medicare. I put in for a Zytiga grant with Johnson & Johnson and now get free Zytiga and Xgeva. Give a try. Need to send your IRS, Who cares..other than Trump.
To bad I can not even die without getting Ripped off. Big Pharma & Insurance must be put under control, But by Who?
We are currently on the Janssen Zytiga program as well but I think it costs $10 not free. However, our current insurance has informed us we cannot get name brand Zytiga next year unless we pay full price out of pocket.
I have posted elsewhere about our situation where supposedly generics save folks money but not in our case. Generics have caused us more grief as we cannot get onto every manufacturer's copay assistance program as we don't know which company the fill will come from with our insurance specialty drug program and some disqualify us due to our insurance and/or income.
Xtandi (which quit working for him) has no generic was much cheaper for us. So if anyone needs a reason to try Xtandi that would be it.
"I am three years out to qualify for Medicare, and have continued working to keep my insurance. I know Cobra will cover half of that."
You are sort of screwed. I would start investigating and monitoring the health systems in various states and be prepared to move to a better state when the time hits.
I wouldn't bother wasting any time investigating the health systems of any Repub controlled states.
What state do you currently reside in?
I have never lost an appeal. Also never be afraid to reach out to the insurance commissioner in your state if dissatisfied whether a health or auto claim. I have had great success here as well. Best of luck. It’s bad enough having an illness. Sad you have to fight sometimes.
Without getting into a discussion on where the ACA is going, does anyone use the ACA plans, or go straight to SS disability for medicare?
I am 74, diagnosed at 70 with Gleason 9 and already metastatic (lymph node). I have Medicare and Blue Shield supplement. I have had four surgeries, HIFU, Provenge, 45 sessions of radiation and 6 sessions of Doxetel. Have been on Lupron since diagnosis. Now on Zometa and Xtandi. I paid $25,000 for HIFU and $601.06 a month for the Xtandi after initial payment of $2,500 for donut hole. Other than that I have paid nothing. Needless to say I am more than pleased with my coverage and believe that everyone should be allowed to buy into medicare regardless of age. Drug prices are ridiculous and something needs to be done about it.
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