Q: Why is there so much research about breast cancer treatment, but so little research about lymphedema which is so often a complication of breast cancer treatment?
A: As a physician with breast cancer and lymphedema, I agree with you - we need more research about lymphedema. There is research going on in the US and around the world; the issue is how much research and when will the results be available to help people living with the disease now. There have been multiple barriers to lymphedema research. Fortunately many of these barriers are getting resolved and research is progressing.
First, there have been myths within some sectors of the medical community, that lymphedema is a rare disease, that nothing can be done about it and that it is not painful. Lymphedema patients like you have helped to educate the medical community about these myths. The incidence and prevalence of lymphedema is increasing and patients are more vocal about demanding access to better evidenced-based care.
Money is always a limiting factor to medical research; clinical and bench research are very expensive. Again, due to the efforts of many families with this disease, research money is increasing, but there is often at least a five-year lag time between when the money becomes available and when the results start to reach patients. Designing research projects takes time: they must go through an academic and hospital review process, the patients must be selected and entered into the study, the study intervention must get done and then the data collected.
Even once the study is completed, it can take years to get the data analyzed, peer reviewed by other scientists and finally published. Even after publication, there is a delay to get new treatments accepted and into the clinics. Academic research is a slow process.
The number of trained therapists available to do the treatments also has limited research. The intervention needs to be standardized (meaning each therapist must treat the same way) so that each patient is getting the same type of treatment. The number of therapists has significantly improved in the last five years. The skill level of these therapists is also improving with experience and continued commitment to ongoing clinical training. Clinical research requires a supply of skilled clinicians.
Basic lymphatic research, unfortunately, has not received much attention because many scientists do not find it "jazzy" enough. Funding and research interest is often associated with "finding a cure" for a "life threatening" illness. However, sentinel node cancer research has made study of the lymphatics "jazzy" and there is renewed interest in understanding the lymphatic system.
Finally the lymphatic system is being seen as an under-explored circulatory and immunologic system. The basic research in circulation and immunology will help not only patients with lymphedema, but, eventually, perhaps patients with cancer, wounds and autoimmune diseases.
I encourage you to keep pushing for lymphatic research funding, but understand that the answers are going to take time.
Q: I am so frustrated! My insurance company refuses to reimburse me for my treatment. If I don't get treatment, it is likely that I will get another infection and go back to the hospital which will be more expensive than my therapy. What is the current status of reimbursement in the United States?
A: One of the most common requests we receive when our several thousand supporting subscribers renew their annual membership is help in resolving insurance reimbursement problems for Complete Decongestive Therapy. The NLN's staff, Medical Advisory Committee and Board of Directors is keenly aware of the frustrations of LE patients, their therapists and knowledgeable physicians in getting treatment adequately covered.
There are many reasons for the current less-than-hospitable insurance environment for clinical lymphology in this country. First and foremost is the lack of genuine understanding about lymphedema within the American medical profession in general, including those physicians who are responsible for setting coverage policy for health plans (HMOs, PPOs and the traditional indemnity plans). Lymphology is not a recognized medical specialty in this country. It is given little attention in the curricula of our medical schools and teaching hospitals. Small wonder then that we see all sorts of discrepancies in insurance coverage for the treatment of lymphedema.
For example, a Blue Cross/Blue Shield carrier providing coverage for the employees of a Big-Three auto maker rejects lymphedema as an acceptable diagnosis for physical therapy (i.e., CDT). In fact, CDT is the safe and effective treatment of choice for lymphedema and there is a specific physical medicine, or Current Procedural Terminology (CPT), code especially for manual lymph drainage (MLD), one of the key modalities of CDT. However, many LMTs and RNs with excellent training in CDT find themselves unable to receive reimbursement for their services.
Although there is no national Medicare policy covering our seniors for their lymphedema treatment, a number of states do have policies for CDT. Some of these policies establish unrealistically low expectations as to the number of treatment sessions required to prepare seniors for a self-care program following clinical treatment, especially for seniors with longstanding fibrotic lymphedema. Some policies exclude coverage of lymphedema caused by high-output failure, e.g., lymphedema caused by long-term lymphatic compensation for chronic venous insufficiency.
On the other hand, there is a national Medicare policy covering the home use of sequential gradient compression pumps as a treatment of "last resort," where elevation and compression garments have failed to stop the progression of lymphedema. Elevation and compression garments, without a prior course of CDT, have never really been effective approaches to controlling lymphedema.
The NLN is working hard to bring order out of chaos in this often irrational and counterproductive insurance environment. At the NLN conference in Orlando, the NLN Board of Directors and Medical Advisory Committee will be meeting in a closed Executive Session with the Deputy Director of the Center for Health Plans and Providers, the group within the Health Care Financing Administration (HCFA) which is responsible for setting national Medicare policy.
In this session we will discuss the parameters of a medically sound and cost-effective national Medicare policy for CDT. These discussions will also emphasize the need to rethink current policy on pumps and the non-coverage of compression bandages and garments for post-treatment self-care.
We believe that if our discussions with the HCFA representative results in an enlightened national Medicare policy for CDT, we will have set the stage for improved coverage through commercial carriers, as well. It may take come time, but we are determined to get there. In the interim, we will keep you posted on our progress.
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