November 2, 2012
NIH Podcast Episode #0171
Balintfy: Welcome to episode 171 of NIH Research Radio. NIH Research Radio bringing you news and information about the ongoing medical research at the National Institutes of Health – NIH . . . Turning Discovery Into Health®. I'm your host Joe Balintfy, and coming up in this episode, November is the awareness month for both COPD and palliative care, hear in-depth interviews about those. Also, find out about a featured clinical trial of stem cell transplantation that may help HIV-positive patients with a specific kind of cancer. That’s next on NIH Research Radio.
(BREAK FOR PUBLIC SERVICE ANNOUNCEMENT)
Balintfy: November is a month of important health awareness campaigns: it is National Healthy Skin Month, Diabetic Eye Disease Month, and National Alzheimer’s Disease Awareness Month, just to name a few. It is also COPD Awareness Month and I’m talking with Dr. James Kiley at the NIH’s National Heart, Lung and Blood Institute to learn more about that. First Dr. Kiley, what exactly is COPD?
Kiley: COPD is an acronym from chronic obstructive pulmonary disease and this is a very severe respiratory condition where the lungs become partially blocked and it makes it very difficult to breathe over time. It’s harder and harder to breathe. It’s called progressive airway obstruction. Sometimes COPD is referred to in other ways such as emphysema or chronic bronchitis. COPD is the third leading cause of death in the United States and so it is extremely serious public health problem. In 2009, it was estimated that about 132,000 people over the age of 45 died because of COPD and of that number, about 69,000 of those deaths were women as reported by the Centers of Disease Control. So you can see that COPD is a very, very serious public health problem that requires a lot of attention.
Balintfy: What steps can people take to prevent COPD?
Kiley: So COPD is largely a preventable disease and what is important to know about this disease is that early detection can lead to effective treatment. We know some of the risk factors for COPD certainly include cigarette smoking. This is a very primary one and an important one but other things, exposures to dust particles, fumes, there’s genetic factors involved in some aspects of COPD. They all play a role. There are occupation exposures that may impact on developing the disease. So there are a lot of things that come into play in the ways in which one can prevent COPD and I think people just can take some steps to deal with that. I think if people with COPD can identify the symptoms early, manage those symptoms, that they’ll live a longer and more active life.
Balintfy: For people living with COPD, once they’ve identified those symptoms, how can they manage them?
Kiley: Well if you’re a smoker, clearly quitting smoking is the best thing that you can do to prevent additional damage to your lung. It’s in fact the best thing that you can do for your overall health. So we can urge people who continue to smoke or active smokers to quit. It is really critical that they take that message very seriously and all should talk with your doctor, your healthcare provider because there are enormous numbers of tools and approaches and resources available to help people quit. I think that today more than ever we have a huge armamentarium of approaches that physicians, healthcare providers can use to help everyone quit smoking.
For those living with COPD, clearly avoid exposures to things that could irritate your lungs, dusts, fumes things like that. You don’t want to get in those kinds of environments. See your doctor on a regular basis to assess your lung function and report on any kinds of setbacks that you have, you may be having, how well your medications are working or not, what’s happening with your breathing and be open, frank and have a very serious discussion about that. Don’t gloss over anything because it may be very critical to how your provider manages your disease. Again, if you are living with COPD, be sure you get vaccinated for the seasonal influenza and be on the schedule to receive the pneumonia vaccine. These are all important things that people can do if they do have the disease.
Balintfy: Dr. Kiley, what’s the goal of raising COPD awareness?
Kiley: The month of November is COPD Awareness Month and there is a day November 14th, which everyone has agreed is COPD Awareness Day. We hope that through a wide range of outreach activities with the media, with professional organizations, with other patient-oriented groups that everyone can raise awareness of this disease because of the importance and the burden of this disease to society. As noted, it’s a huge public health problem. It’s the third leading cause of death in this country. It affects women more than it affects men. It is not just a smoking related disease. It affects people that are not only those who previously smoked. In fact, we know now there are more former smokers than there are current smokers so we have an obligation to make sure that the health of all of those individuals is attended to.
So what we want to do is continue the momentum, continue the awareness raising effort that has started years ago so that we can get people to understand the disease and then take steps to improve their life if they have it or if they know someone that has it.
Balintfy: People can learn more about COPD at the NHLBI’s COPD Learn More Breathe Better national awareness and education campaign website. That’s at www.nhlbi.nih.gov. Dr. Kiley, what can be found there?
Kiley: There’s a wide range of information materials, toolkits, resources, media kits that are all on that website that link to various community outreach activities, coalitions that we’ve set up, patient groups, stakeholder interest groups. It’s a great resource for anybody that wants to learn more about COPD and have the resources that are tailor made almost to taking steps in your own local community to initiate awareness raising events. Also, if you’re a patient, this is a useful place to stop and look at material that may help you in conversation with your physician, your provider because clearly the educated patient is going to have a much cleaner and clearer conversation with their provider to help manage their disease in the most optimal way.
Balintfy: Thanks to Dr. James Kiley at the NIH’s National Heart, Lung and Blood Institute. Again, for more information about COPD, visit www.nhlbi.nih.gov.
Palliative care awareness
Balintfy: November is also National Hospice and Palliative Care Month. I’m talking next with Dr. Patricia Grady, the director of the NIH’s National Institute of Nursing Research about palliative care. And Dr. Grady what is palliative care?
Grady: Palliative care is care that’s directed toward addressing symptoms related to chronic illness or other areas of discomfort so it is really a symptom management and it’s art form.
Balintfy: Is palliative care the same as hospice care?
Grady: It is not the same as hospice care, although they can intersect. Palliative care can take place in a hospice and does, but palliative care addresses a broader range of care conditions and sites of care. For example, many hospitals now, in fact the majority of hospitals of approximately 300 beds have beds within those hospitals that are directed for palliative care now. So it does occur in hospital situations as well as in extended care and even in the home.
Balintfy: When would someone receive palliative care, Dr. Grady?
Grady: Palliative care is best received any time a person is experiencing an illness or a set of symptoms that causes them discomfort for a period of time. For example, most chronic illnesses sometime during chronic illness the average person receives palliative care even though they may not think of it that way. For example, many of the measures that are taken to ease symptoms of a chronic illness even such as extreme arthritis or during episodes of multiple sclerosis, etc., many of the approaches are actually palliative care, supportive care measures.
Balintfy: So it’s not just pain relief or pain medication…
Grady: No, but pain actually is another symptom around which there is a fair amount of palliative care. Although we know that there are medications for pain as for many other symptoms, those medications are now always taken by patients optimally nor prescribed ultimately for patients. So that often if they’re not effective, patients resort to other measures to help to ease the pain.
Balintfy: You had mentioned that palliative care is offered in hospitals. Researchers report that the number of U.S. hospitals with a palliative care team has increased more than 148 percent between 2000 and 2012. Now about 66 percent or two thirds of hospitals have palliative care. In larger hospitals, those with 300 beds or more, the increase is even higher, with 87 percent offering palliative care. In addition, all VA or Veterans Health Administration hospitals now have a palliative care program. Why the growth Dr. Grady?
Grady: So part of what’s driving this increase is that we have a population that is aging and living longer with multiple chronic illnesses and many of these chronic illnesses are those which are not best addressed by medication but can be eased. The symptoms of which can be eased by other approaches whether it’s supportive care, exercise, modifications, and those kinds of approaches. So we have a much larger population now that really would be appropriate to receive palliative care.
Balintfy: Are there misconceptions about palliative care?
Grady: There are. There are misconceptions that palliative care is only for those in end of life and it’s important at that stage, but it is available at other times and important at other times. Also, that it would only be for the elderly; that is not true. There are also concerns that it would be expensive and much of it is covered by third party payers or other coverages and there is also a concern that a person may lose some of their other benefits that they engage in palliative care and many of those things are just not true, most of those things are not true. You just need to explore what the options are that are available.
Balintfy: Who benefits from palliative care and how do they get that benefit?
Grady: Most people report that they feel that they benefit from palliative care and patients in general report that but also family members and friends do. Because when palliative care is available, the symptoms of pain or distress are usually reduced so that patients are able to enjoy better quality of life but also better able to participate in treatment decisions and better able to communicate with their family members and loved ones. So as a family unit, the groups tend to work, the families tend to work better. So we do hear reports that all of those barriers, first of all the comfort is improved but the sense of wellbeing improves and the ability to participate and help to direct one’s care improves plus the communication between family members improves.
Balintfy: NINR has developed a brochure about palliative care. Can you explain what it covers?
Grady: Yes. We have a palliative care brochure, which is available for download off our website and in a space of less than two years that has been downloaded over 2 million times by individuals visiting the website. The brochure is helpful in that it describes what palliative care is. It helps to clear up some of the misconceptions. It also helps to identify when you might benefit from palliative care of when your family member might benefit from it and it directs people to locations that they can learn more about it and to access some of the resources that are available for palliative care.
Balintfy: And it’s also available in Spanish as well. Why?
Grady: Yes. Well, you know, we have on in Spanish. One of our fastest growing populations in this country, as you know is our Hispanic population and it’s interesting that in many cases people in the Hispanic population may have lower mortality rates, they tend to have higher morbidity rates and so this is a group that we particularly wanted to reach and provide information. That has turned out to be a very popular brochure. It is really intended for family members, caregivers and for people who may be less comfortable in offering it in another language. One of the things that we know from our research is that cultural influences are particularly important throughout our lives but especially when you’re in a crisis situation and when you have a serious illness, these things become much more important and sometimes in fact can be impediments to reaching out for help. So we wanted to make certain that we would help to alleviate some of those concerns.
Balintfy: Thanks to Dr. Patricia Grady, director of the NIH’s National Institute of Nursing Research. For more about palliative care and palliative care research, as well as a way to get a copy of the brochures in English or Spanish, visit www.ninr.nih.gov.
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Featured Clinical Trial – Safety of Stem Cell Transplants for HIV-Positive Cancer Patients
Balintfy: Welcome back to NIH Research Radio. In this episode, we continue a reoccurring series of discussions with writers and editors from the NCI Cancer Bulletin. The first chat was back in episode 168. As a reminder, the NCI Cancer Bulletin is an on-line newsletter with information from the NIH’s National Cancer institute about cancer research. Now, I’m talking with Daryl McGrath, the editor of the NCI Cancer Bulletin’s Featured Clinical Trial column. So first, before we get into a specific story, can you explain the type of article you write?
McGrath: Okay. The articles that I work on are generally called Featured Clinical Trials. In every issue of the bulletin, we try to feature one NCI sponsored trial that’s currently open and recruiting patients to kind of demonstrate the breadth and depth of NCI’s clinical research programs. We feature trials that are being conducted at NCI as well as those that are sponsored by NCI but conducted elsewhere.
Balintfy: And how many clinical trials have you featured so far?
McGrath: We’ve featured almost 250 trials now.
Balintfy: Why have a regular feature like this?
McGrath: Well NCI supports many, many clinical trials from very common cancers like breast cancer and lung cancer, prostate, colorectal, but we also sponsor research into trials or into cancers that maybe don’t get as much publicity. Children’s cancers are supported by NCI through the children’s oncology group. We also sponsor clinical trials into prevention techniques, some epidemiology studies. We fund trials in treating diseases that are less common like pancreatic cancer but still have a very high disease burden and even very, very rare disorders such as myelodysplastic syndromes, some HIV related syndromes that are associated with cancers that may lead up to cancer. We look at how to address those and treat people who have those diseases.
Balintfy: What is the clinical trial that you’re featuring in this latest edition of the NCI Cancer Bulletin?
McGrath: We’re featuring a phase 2 study, which is a safety and feasibility study of an allogeneic stem cell transplantation.
Balintfy: And what is that?
McGrath: It’s a stem cell transplantation of blood forming stem cells from a healthy donor to a donor who or to a patient whose immune system has been depleted by their cancer treatment.
Balintfy: You mentioned this is a phase 2 trial, meaning it is primarily testing for safety, not so much measuring the treatment itself. But can you explain a little bit more the scope of the trial and what they hope to treat?
McGrath: Sure. This is a study in patients who have certain hematologic cancers, blood cancers or myelodysplastic syndromes, which are associated with the blood cancer group and it’s also specifically in patients who have coincident HIV infection. Allogeneic stem cell translation has been used very successfully to treat and even cure some people with blood cancers. But historically the therapy wasn’t available to people with HIV because the treatment is so intensive and grueling and also the transplanted stem cells when they produced immune system cells, those cells would then be infected by HIV as well and they would probably not perform the function that they needed to perform. In the last decade or so, a type of therapy for HIV called highly active antiretroviral therapy has really changed the landscape for people with HIV. They’re able to live much longer, much healthier lives and now that they’re living these longer, healthier lives, some doctors are wondering, well maybe we should reinvestigate whether or not they can benefit from this allogeneic stem cell transplantation.
Balintfy: You talked to the principal investigators for this trial, which I understand you do for every feature. Did they say something about what stood out to them or what made this trial important?
McGrath: Well the allogeneic stem cell transplantation is probably one of the very, very few options that people with these types of cancers have available that can help them survive longer and maybe even cure them. People with HIV do tend to get these cancers specifically. So if they can successfully treat them, treat the HIV positive cancer patients with stem cell transplantation, it could open up and entirely new avenue of therapy for people who have these cancers and who would otherwise be eligible for stem cell transplantation but aren’t because of their HIV status. A big part of it was just to show that this is possible, that it’s feasible and may be help patients and doctors out in the community understand that it should not be an automatic exclusion from stem cell transplantation. HIV should not be an automatic exclusion from stem cell transplantation.
Balintfy: Are there other details about the trial you can highlight?
McGrath: It is a nationwide trial. There is a list of centers that are participating on the NCI website. They are recruiting 15 patients I believe and they’re going to be following the patients for I believe three years after their transplantation to monitor safety. They’re just looking to make sure that it’s something that is an option for those patients.
Balintfy: Thanks to Daryl McGrath at the NCI Cancer Bulletin. To read his latest Featured Clinical Trial, visit the bulletin website at www.cancer.gov/ncicancerbulletin. And of course for a complete list of more publicly and privately supported clinical trials, visit www.clinicaltrials.gov.
Balintfy: That’s it for this episode of NIH Research Radio. Please join us again on Friday, November 16 when our next edition will be available. Until next time, I'm your host, Joe Balintfy. Thanks for listening.
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