Anchor lead: Who will treat all the people who are surviving cancer? Elizabeth Tracey reports

By 2030, there will be millions of people who’ve survived their cancer treatment, the American Cancer Society has just reported, and while that’s great news, it does leave the medical system in a bit of a bind. William Nelson, director of the Kimmel Cancer Center at Johns Hopkins, comments.

Nelson: The current strategy of having them in sort of No Man’s Land between being returned to primary care and chronically coming back and visiting surgeons, radiation oncologists and medical oncologists, who are treatment oriented specialists, may not be the right approach. There aren’t enough medical oncologists, radiation oncologists, to take care of the people who need the treatment. Having their time devoted to long term survivors doesn’t make much sense. Primary care as it exists now is unequipped to take care of the problems these people will present, so this is a health services challenge and I think that’s why they pointed it out. :33

Nelson says this may indicate a need for a cancer survivor specialty to be developed. At Johns Hopkins, I’m Elizabeth Tracey.


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Anchor lead: A mouse model may point the way toward a better understanding of how Parkinson’s disease develops, Elizabeth Tracey reports

A protein called synuclein that’s involved in nerve cell communication is thought to be the culprit in causing Parkinson’s disease. Now a mouse model developed by Ted Dawson, a Parkinson’s disease expert at Johns Hopkins, and colleagues, shows that when aberrant synuclein is injected into the GI tract, the condition develops.

Dawson: We took pathologic synuclein that we made in a test tube. We injected it into the stomach. These mice get Parkinson’s disease, move slowly, they’ve got GI problems, problems with cognition, anxiety, depression. It just completely replicates Parkinson’s disease. It really supports the idea that Parkinson’s disease can start in the stomach.  :32

Now the question of how to interrupt this process is being investigated, Dawson says. At Johns Hopkins, I’m Elizabeth Tracey.

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Anchor lead: A blood test for cancer may also be able to isolate the location, Elizabeth Tracey reports 

Looking at patterns of DNA fragments in the blood, Johns Hopkins researcher Victor Velculescu and colleagues have developed a new screening test for cancer. Among its many advantages, this blood test may also spot where the cancer is developing in the body.

Velculescu: We’ll be able to better tell you based on this profile where the tumor is coming from. It’s important to note that if you were to do this just by chance and draw a number out of a hat, the chance of getting the right answer and placing it in the right tumor type is only about 13-15% of the time. So this is a vast improvement over what we already had and does add this value to potentially telling individuals where the cancer is coming from, which is an important part I think of any cancer screening test that goes across multiple cancer types. :31

Velculescu says this test does not rely on the presence of mutations but rather detects a property of all cancers to produce chaotic DNA fragments. At Johns Hopkins, I’m Elizabeth Tracey.

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Anchor lead: Integrating several pieces of data may point the way toward early detection of Alzheimer’s disease, Elizabeth Tracey reports

Cognitive testing, brain scans, and many other measures over twenty years in people at risk to develop Alzheimer’s disease may help develop a method to spot Alzheimer’s disease early. That’s the hope of researchers at Johns Hopkins who developed the method. Laurent Younes, chair of the department of applied mathematics and statistics, explains.

Younes: What the model did was asking whether in the data there were suggestions for the existence of a change point. The data that we used were anatomic data we looked at the structure of the brain, cognitive data from test to test, and data related to protein, CSF data. We found that most of our markers having the change point between ten and fifteen years before the disease can be detected.  :30

Younes notes the model can’t be used at this point to assess an individual’s risk so more research is needed. At Johns Hopkins, I’m Elizabeth Tracey.

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Anchor lead: A new study may point the way to early detection of Alzheimer’s disease, Elizabeth Tracey reports

Finding out that people are on the road to developing Alzheimer’s disease early may make intervening more effective, and a new test developed at Johns Hopkins may suggest a way. Laurent Younes, chair of the department of applied mathematics and statistics, describes the study.

Younes: What we developed is a statistical model to try to detect a possible change point in several markers that are related with Alzheimer’s disease, this change point occurring several years before the disease itself is manifest.  :17

Younes says a very long term study called Biocard provided the data.

Younes: This is made possible by the existence of the Biocard study that enrolled patients 20 or more years ago when they were cognitively healthy so data was acquired before the onset of the disease.  :16

At Johns Hopkins, I’m Elizabeth Tracey.

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Program notes:

0:10 Federal regulations regarding hospital costs
1:12 CMS mandated charge masters on websites
2:10 May not reflect a negotiation
3:06 Other things involved with care not reflected online
4:10 More complexity
5:06 Advice to patients
6:35 End

Full Transcript:

00:00 Elizabeth Tracey:  Welcome to this month's Pulse, I'm Elizabeth Tracey.

00:03 Redonda Miller: Hi I'm Redonda Miller, the president of the Johns Hopkins Hospital.

00:06 ET: Redonda, this month we're talking about something, that I at least think is rather interesting. The federal regulation that hospitals need to provide price lists so that people can scan those and say hey I can understand what this bill is about. What are your thoughts about that?

00:22 RM: I can certainly understand the intention of the federal government and CMS. Price transparency is pretty key nowadays. Think about the average American and how much each of us are spending on healthcare. Over the last five years we have seen a huge rise in high deductible plans. Almost half of adults in the U.S. now have a high deductible insurance plan where they are paying fifteen hundred dollars or more out of pocket before their insurance even kicks in. For some families it's five thousand. So as a patient who one could argue is purchasing and consuming healthcare, it is really important that you understand what you're paying for and how much.

01:07 ET: Do these price lists that hospitals are obligated to provide health to answer that?

01:12 RM: That is the question. As of now, CMS has mandated that hospitals put their charge master on websites and update it at least once a year. If you've ever seen a charge master, it is sometimes fifty thousand lines of things you might consume in a hospital during your stay with the price besides each one of them. They could be incredibly tedious to go through from a patient, but I think there more issues with them if you don't mind if I elaborate?

01:43 ET: Not at all, please do.

01:45 RM: I think one of the big issues is buying healthcare is not necessarily like buying a car. The price when you walk into car dealer, you see a sticker price on a car, it's not necessarily the price you pay. There's a negotiation between you and the car dealer. In healthcare, it's similar to some degree in the sense that the price you see on that charge master may not reflect a negotiation that occurred between an insurance company and the hospital. A hospital may charge a hundred dollars for this a contract between that hospital and an insurer - says the insurer only agrees to pay fifty dollars and that's what the patient would see. The bottom line is what you see on the price master may not be what you're actually charged via an insurance contract.

02:35 RM: Along the same lines, if we go with car analogy, so to speak. The sticker price when you walk into the car dealer is not always all inclusive. You remember you go back and you want to buy the car, by the way you need to purchase tags, a certificate or maybe there's a warranty you need. The same thing, the charge master for a procedure in a hospital is the hospital charge. But as a patient there may be a physician charge. You need to remember that are other things involved with that care or maybe you leave the hospital and have to go to a rehabilitation stay. There are other aspects of care not reflected online.

03:14 ET: How are we going to answer this? These are certainly questions I think that as a consumer, I would want to discern what I'm really being charged.

03:24 RM: I know it's a difficult question. As a hospital president but also as a physician myself, I would say cost isn't the entire picture because there are more to delivering care. For instance, the numbers on a charge master may not reflect the quality. Is this the surgeon who has done a thousand of these procedures and has excellent outcomes versus someone who has done one or two and the outcomes may be poor. How do you put a price on that? Or the complexity - here I'm coming from a perspective of Johns Hopkins, where we see cases who are often the second or third time the case is being done. For instance, a simple spine surgery somewhere else may have a complication, and they come to the Hopkins Hospital as redo operation, which is much more complex. Finally, there's this trust factor. A patient knowing his or her physician and that trust. So these are all added dimensions of healthcare that are hard to capture in a charge master.

04:25 ET: What is your sense right now of the utility of these things? You may know that federal government recently invited consumers to come on to a website created solely for this purpose and comment one what they experienced with them has been.

04:42 RM: I think that's where we are now. I'm so glad that the government has asked the patient - the consumer what he or she thinks because most will tell you right now that they are not terribly useful to them. How can we improve it? How can we reflect all the different elements that go into pricing healthcare? I do think we owe that to our patients. I really do. So we'll have to work on it.

05:04 RM: In the meantime, if you're a patient I do have some advice that I could offer. That would be to ask questions. If you see a charge on a website that you don't understand, call your insurance company. Go through the details of the procedure with your insurance company, so you have a true sense of what your plan covers and doesn't. That would be a more realistic picture.

05:29 RM: My second piece of advice is if you see a charge or you're worried about needing a procedure and can't pay it, please call the hospital. Our finance department offers all kinds of plans and financial assistance that we can help you work through it so you can afford the care you need. We are prepared to help.

05:48 RM: So those would be two pieces of advice I would offer.

05:50 ET: Those are excellent. What would you say in your estimation as the timeline when all of this might actually get a little more practical?

05:57 RM: I think the public will demand it. I don't see in the near term that out-of-pocket costs for our patients are going down by any dramatic amount. I think our patients will demand it and as I mentioned they deserve it. I'm hopeful the timeline will be measured over the next year too and not more than that.

06:15 ET: Excellent. Thank you so very much. That's this month's Pulse.

06:18 RM: Thank you.

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Anchor lead: A new approach to finding cancer DNA in the blood has been developed, Elizabeth Tracey reports

Your blood may hold the key to early detection of cancer since DNA circulating there can be detected and analyzed, hopefully spotting the disease early. A new approach to analyzing this DNA  known by the acronym DELFI has been developed by Victor Velculescu and colleagues at Johns Hopkins, along with colleagues worldwide.

Velculescu: The DELFI approach uses machine learning, a type of artificial intelligence, to identify abnormal patterns of DNA fragments in the blood of patients with cancer. By studying these patterns we could also identify the cancerous tissue of origin in up to 75% of cases. This study represents many years of work carefully analyzing the characteristics of DNA that is in the blood of patients with cancer. DELFI is different than other liquid biopsy approaches that have been developed to date.  :29

Velculescu says other tests rely on mutations or addition of chemical groups to DNA but DELFI looks at patterns of fragments. At Johns Hopkins, I’m Elizabeth Tracey.

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