BETA - Why is it important to become your own best advocate?

How can I become an active participant in my health care? There are many sources of education to help you become a more active participant. They include disease websites such as wines that are available from the International Myeloma Foundation, the Multiple Myeloma Research Foundation, the Leukemia and Lymphoma Society Myeloma Crowd where educational videos, webinars and interviews are plentiful. These organizations all have seminars available as well where they will bring myeloma experts to a town near you hopefully to help educate patients. Support groups are another way to become an active participant. There are 150 myeloma support groups around the country. It's a great way to meet other patients, share experiences and listen to experts as well. And finding social media can play a role via apps like Facebook groups or smartpatients.com or Twitter where you can follow your favorite doctor and other myeloma patients. How do you become your best advocate? Why is that so important? Myeloma is a very heterogeneous, difficult disease. To learn about it, you really have to study it. And to become your own best advocate, you have to know your enemy. The reason for doing that is to make good myeloma treatment decisions. You can work with your doctor to improve your treatment if you advocate for yourself, know what's possible with myeloma treatment and ask for what you need. Tell your doctor if you're having concerns and problems, you need to be an advocate for yourself. No one understands your health, your situation better than you do. Introduction and Why is it important to be your own health advocate? Hi, my name is Gary Peterson. I'm the editor of a website by the name of myelomasurvival.com and also a member of the team at Myeloma Crowd providing you with this information. Plato, I think, said it probably as good as anybody when he said, you don't know what you don't know until you know it. And what I mean by that is that some 85% of patients that have myeloma generally end up going to their local doctor who finds something wrong with them and will send them on to an oncologist. Now, this oncologist isn't necessarily a skilled myeloma specialist. So as a result, this happens to be a very, very complex disease. So it's important that you understand that. In addition, you may be either high risk or low risk myeloma. There's a big distinction between the two and as a result, you would like to know that. And given that, that might change the way that you in fact have a treatment plan put together. So another point that I think is so important is that these drugs are not necessarily cheap. And maybe that's one of the reasons we have been blessed with so many new drugs and and that our disease has had such visibility and innovation is because of that. But because they're so expensive, 65% of the patients are usually 65 or older. And at that age, you are probably that 65% of all patients with myeloma are at that age or above. And as a result, you are on Medicare. Medicare, unfortunately, doesn't allow the people at the drug companies to provide assistance and they do it to anybody with normal insurance, conventional insurance. But for Medicare, it's not allowed. And as a result, you could be subject to $20,000 to $40,000 worth of bills for co-pay plus another $5,000 for Medicare costs, all of which you're covered by a drug company would be paid for. However, because Medicare doesn't, you know, you've got to rely on a third party. And what that means is that drug companies give to LLS, PAN, or some other organization, and they can provide you with this assistance. And as a result, you can, in fact, be able to afford your drugs. So I think that's important that you know that you can join more than one and that you can get your drugs paid for. And I think that's probably some of the very important reasons that you need to be your own advocate, because you won't find these things out by yourself unless you do research. One of my favorite patients and all my patients I'm very fond of, but I felt particularly troubled by this patient who had Velcade for three months. And at the third month showed up to his infusion visit in a wheelchair. He couldn't walk. He could not feel anything below his thighs. We asked him at each time he got an injection and at each clinic visit, did he have any tingling numbness to his hands and feet? And he denied it for three months until finally he couldn't take it anymore and said, I can't walk. I have a problem, but kept it quiet. We could have avoided his significant painful neuropathy had he just told us, hey, this is going on. You should switch me. You should use a different dose, a different method of administration. We could have made more difference. So anyway, we could improve symptoms and have them, patients communicate what's wrong. We can make life better and try to change therapy.