Oral Cancer Fairness Act

The oral cancer fairness act is a state by state law requiring insurance companies to cover pill treatments that you can take at home and not just the shots, etc., that you get in the doctors office. There are still a lot of states that have not passed it yet.

With the results from the Stampede and Latitude trials out there is a big push to put fellow warriors on Lupron and Zytiga (with prednisone). I live in Michigan which has not passed the oral cancer fairness act. As a result my medical oncologist was not very positive that the Zytiga would be covered. Lucky for me, while I live in Michigan my insurance is from New Jersey (retirement medical from work). I just have to pay $22 of the $9500 monthly cost.

I was wondering how many of us who live in states that have not passed the fairness act have had their request for coverage denied.

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  • Malecare could take this up as an advocacy project if there is enough interest. Please post below

  • My husband was on Zytiga for 3 1/2 years. The cost for this drug was nearly $7,000/mth. Next he went on Xtandi for upwards of $8,000/mth which didn't work. Now he is on Lynparza for over $9,000/mth. You could quickly lose everything trying to pay for these drugs. It doesn't make any sense that you can take a intervenous chemo and your insurance will cover it for a fraction of these costs, but taking pills at home could bankrupt you. I beg Malecare to take this on.

  • My oncologist at Seattle Cancer Care Alliance is appealing my insurance company's denial of Zytiga in combination with Lupron and prednisone. He believes this treatment will become a new standard for advanced prostate cancer. I should receive word soon. It would be helpful if we made this an advocacy project. I will post when I have more news. Seems we must always push and push to be heard.

  • First, I was wrong thinking that the oral cancer fairness act would cover Zytiga. But you are 100% correct that Lupron and Zytiga will be the treatment of choice. I feel so guilty that my insurance covers it but the man next to me is on his own.

    Please be strong.

  • Seeing people paying 7,8,9 thousand a month is insane. I'm extremely fortunate that the Veterans Administration covers all my drugs at no cost with the exception of Provenge that my Medicare and blue cross covers. Something MUST be done to correct this miscarriage of justice. Who can I contact to complain? People have accused me of being the biggest pain in the rear that has ever graced the face of the earth. Someone please point me in the direction of the slime balls who ruin lives with these outrageous costs.

  • Lol....smiles. Go gettem!

  • If your state does not have the oral cancer fairness act then pressure your state representatives. It is not fair that I only pay $22 a month but the guy down the street pays over $9000 a month!

  • I live in rural Michigan and it appears that it's time to crawl up someones rear and camp out until they introduce a bill in Lansing.

  • The oral cancer fairness act was introduced in Michigan last year. It was defeated do to the insurance companies. We need to get them to reintroduce it this year!

  • You could start at 1600 Pennsylvania Ave NW, Washington, DC 20500, then work your way down the street to the Senate and House Office Buildings.

    But the battle is really being waged at the state level. Go to this website and you'll see that only seven states don't have such a law. Three, including your Michigan, have active campaigns to change it going on. speac.myeloma.org/oral-chem... There are state-by-state fact sheets explaining each state's approach to this.

    Yes, It should be a law at the national level; that would level any discrepancies between all the various state laws.

  • Pill form at home would be AWESOME!

  • It is great - except for the side effects. But then again, you have to be alive to have side effects. Bring them on!

  • Like like like ;)

    I did not know they actually already had them in pill form! Wow... That would save a lot of pain getting the injections. They are extremely painful injections :(

  • I think there are some apples and oranges and pears comparisons in play.

    The main focus of the typical Cancer Treatment Fairness Act "would require that insurers that provide coverage for both IV AND oral chemotherapies must provide the coverage for oral chemotherapies on a basis no less favorable than coverage for IV treatment, including patients’ out of pocket (OOP) costs.

    Chemotherapy is a critical component of cancer treatment, however many insurance plans cover intravenous (IV) chemotherapies, a medical benefit, differently than oral chemotherapies, a pharmacy benefit."

    In prostate cancer, the usual Chemo agents, like Taxotere and Jevtana, are IV administered under supervision for some pretty valid reasons, and FDA approved oral versions are not available, to my knowledge. Most Insurances cover these as necessary medical benefits, and the Fairness Act does not apply.

    Conversely, the more recent, really expensive oral drugs like Zytiga and Xtandi are available in oral form. They are not administered via IV. Again, the Fairness Act does not apply as a comparison between available IV vs. oral administration and differential Insurance coverages. The huge cost billed for these drugs by the manufacturers is a different matter. As is the willingness of Insurance plans or companies to pay those costs, or to pass along to patients variable copays, or to impose other restrictions.

    Other very expensive treatments, such as immune-treated blood cells Provenge and radioactive agent Xofigo, don't even lend themselves to oral, pill, or capsule administration in the first place, and again, the Fairness Act does not apply, but many of the other Insurance/cost issues as mentioned above, do apply.

    So what to do about it? I'll just throw my two cents out there. Many others will have many other ideas.

    In the short term as a patient, be sure to check ahead of time the Drug Formulary and other Insurance coverage(s) of your insurance plan(s), including any PreApproval and other restrictions. Try to plan for coverage and any available financial assistance.

    Support an FDA that balances trying to make proven effective new drugs or new uses for drugs available, while keeping us safe from harm.

    In the longer term, perhaps give some consideration to finding ways to "patch" the problem of a drug costing 2, 3, or 4 times as much in the USA as it costs over a political line in another country like Canada or some other country. One such recent proposal was national legislation in the form of an "Affordable and Safe Prescription Drug Importation Act" which would permit importation from Canada, or, eventually, from other countries in the Organisation for Economic Co-operation and Development (OECD), with standards for the approval and sale of prescription drugs that are comparable to those in the United States.

    Other First World countries do not have these types of problems with different citizens paying vastly varying premiums and copays for the same medical treatment, drug, or service. Any longer term "fix" will be in that realm.

    Just some personal thoughts.

    Charles

  • Why would the Fairness Act not cover Zytiga and Xtandi? I thought that was the point of the legislation--to provide parity of coverage between expensive oral drugs and IV-administered drugs like chemotherapy.

  • You are right and I was wrong. I am very sorry for any confusion I created.

  • Yeah, I guess the insurance companies are making a bogus distinction between medication applied at a doctor's office or hospital vs medication taken at home. Is this somehow related to Medicare coding or allowances?

  • It's really strange to see one of the richest countries in the world not providing free health care for all. It seems your electoral system allows Pharma companies to lobby against it. Here in the U.K., Abiraterone costs retail £2850 per month ( around $3500), but our NHS pays much less than that. Your Pharma companies charge you $9000 for exactly the same drug. Where's the honesty in that?

    I have tried to understand your system, but it's unfathomable.

    In the U.K. It's simple. If you are in employment, you pay an additional tax called National Insurance which covers unemployment benefits and free health care from cradle to grave. Your employer also pays into the National Insurance. This payment is not just for you, it is for the entire population.

    Doctors are employed by the NHS for fixed hours per week. They are then allowed into private practice outside those hours, where they provide exactly the same expertise but at a price, which, if you choose or can afford to pay for, Private Health Care Insurance pays for. The only advantage in Private treatment is you get seen by a specialist quicker, and the hospitals are more luxurious with private rooms.

    In my case, when my PSA results came in, I was seen by an NHS Oncologist within 2 days. Private Health couldn't beat that!

  • The dang lobbyists have perverted the system here in favor of pure greed. Our political system is corrupt and causes pain and distress to our citizens. How about Tort reform too? Oh, the trial lawyers can't abide that and they've bought off the politicians too.

  • Bottom line, this needs to be passed in every state. Many thanks to Dr_Who for getting this information to us. There are two Bills in the General Assembly in NC, HB206 and S152 which may be stuck in the Senate. I have emailed my state Representatives Kevin Corbin and Jim Davis about this legislation but have not received a reply from either of them. The information on the NC General Assembly website list Macon County reps Kevin Corbin voted against it and Jim Davis voted for it. Seems strange that Corbin is in the Insurance business and Davis is in the medical field. Will anyone on here help me find out if this legislation is still being considered.

  • Our overall health can be greatly affected by oral health. So deeply intertwined as we start to learn more, the mouth is a great predictor and diagnostic aid. We must start to force insurance companies to pay for oral care when it has been affected by cancer or other treatments that damage your ENT. I am an MCRCPa and a survivor of throat cancer. As a result of the radiation to the jaw, I am left with teeth falling out, pain and no insurance to cover it. It's like they came in and installed new windows, but left them unsealed or painted.

    We absolutely should throw advocacy to this, but in my research, it is a losing proposition. The best possible thing is to inundate your representatives from local on up to pass legislation to add it. It is a perfect time now that we in the US are in the throes of discussing healthcare. I'd love to see some movement on this!

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