Lymphedema news

URGENT: Medicare to significantly REDUCE treatment options for patients with lymphedema. Here’s how you can take action and fight back!

"By depriving patients with lymphedema access to a proven, effective therapeutic option, these individuals and their families will likely suffer."

Just last month I wrote an article on the research study published in JAMA Dermatology about the benefits of pneumatic compression devices for lymphedema treatment, followed by an interview with Dr. Alan T. Hirsch about the incredible impact the study holds for future lymphedema research and insurance coverage. If you recall, the study found that pneumatic compression devices can not only save on healthcare costs, but could also significantly improve patient health and quality of life. (Find additional pneumatic compression device studies here.)

It’s bitterly ironic, then, that Medicare recently announced a proposed coverage policy that, if enacted, would severely restrict coverage of pneumatic compression devices (PCDs) for over a million lymphedema patients. This is an enormous setback in lymphedema care that could leave some patients with no treatment options as their condition progresses.

I am lucky to have a pneumatic compression device of my own but I know how difficult it can be for patients to get a PCD through Medicare already, because you all have told me through countless messages and comments and emails. To think that patients may be flat-out denied this incredibly beneficial form of treatment is heartbreaking, frustrating, and most of all angering, because Medicare had published this decision without sound scientific justification nor adequate consultation with either health professionals or patients.

“Responsible health professionals seek to support policies that improve both individual and community health. I cannot imagine how this proposed Medicare policy achieves either aim,” Dr. Hirsch said in a press release about the policy. “By depriving patients with lymphedema access to a proven, effective therapeutic option, these individuals and their families will likely suffer. The opportunity to improve health and functional independence as well as to lower national healthcare cost would be lost.”

The proposed ruling is scheduled to become effective on December 1, 2015, which means we need to speak out NOW to express our opposition. It is critical that the medical community, patients, and advocates spread the word and take immediate action to prevent this policy change from going into effect.

Below is from the Medicare policy change fact sheet issued by PCDPolicy.org titled “Medicare Policy Change Could Significantly Reduce Treatment Options for Cancer Patients and Others with Lymphedema.” Please read and share:

Issue: Medicare has issued a Local Coverage Decision (LCD) that will severely restrict reimbursement for pneumatic compression devices (PCDs) for lymphedema patients who could benefit from such treatment. If this change in policy is enacted, lymphedema patients will be denied reimbursement for PCDs until the condition is severe and irreversible adverse effects have occurred.

Medicare has covered pneumatic compression devices for lymphedema at-home therapy for more than 20 years. The new policy, developed and released by four local Medicare Administrative Contractors without a public comment period, is significantly more restrictive than Medicare’s prevailing national coverage policy for PCDs. These restrictions and the lack of public input to the policy are in potential violation of Medicare regulations governing coverage policy development and in conflict with the agency’s longstanding position that such devices are a viable treatment option.

When Will This Take Effect: Medicare’s new policy, which is scheduled to take effect December 1, 2015, will delay, drastically reduce or eliminate reimbursement for one of the few therapies – pneumatic compression devices (also called “lymphedema pumps”) – that lymphedema patients can use at home to control debilitating symptoms, leaving some patients with no treatment options as their condition progresses.

What is Lymphedema: Lymphedema is a serious and lifelong condition for which there is no cure. Lymphedema, which presents as swelling of the limbs and other parts of the body, is a lifelong, progressive and often incapacitating condition that results from damage to, or impairment of, the lymphatic system. Lymphedema is a common result of cancer treatment such as surgery or radiation, but can also be a consequence of other surgical interventions, infections, venous disorders and trauma. Controlling the swelling requires consistent and ongoing treatment.

What Does Lymphedema Treatment Do: The goal of lymphedema treatment is to prevent the condition from progressing to a severe level. Research published in peer-reviewed journals has demonstrated that PCDs reduce swelling and rates of infections, decrease hospital, physical therapy and outpatient visits as well as improve quality of life for lymphedema patients. The end result of pneumatic compression device use is improved patient health outcomes and a reduction in healthcare costs.

Who Will Be Impacted: Lymphedema affects more than five million people in the United States, with over one million patients eligible for Medicare benefits.

Patient Group Existing Reimbursement Policy Proposed New LCD Reimbursement Policy
Patients with irreversible lymphedema For more than 20 years, Medicare has covered reimbursement for PCDs, enabling patients to use a PCD at home to stabilize and improve symptoms before they become severe. Based on this policy, PCD use will be unavailable, except for those who have progressed to the most severe, debilitating and often permanent symptoms.  Patients are likely to suffer permanent disfiguring skin damage, functional impairment, limb deformity, pain and serious infections.
Breast cancer patients PCDs are now reimbursed to help improve symptoms, restore function, and prevent disease progression for breast cancer survivors with lymphedema. PCD use will be unavailable, as the new policy’s criteria will virtually eliminate access for most patients with breast cancer-related lymphedema.

 

Patients with limb-only lymphedema Advanced PCDs have, for two decades, been used (and reimbursed) for patients with limb-only lymphedema. Advanced PCDs will no longer be covered for these patients, even when all other therapeutic options have failed.

 

Patients who experience improvement during more conservative therapies Patients can be reimbursed for PCDs if a physician determines that “significant symptoms still remain” after use of conservative therapies. Patients will not receive reimbursement for PCDs regardless of physician determination that significant symptoms or disability remain after use of conservative therapies.
Privately insured patients PCDs are frequently covered by commercial insurance. Patient access to PCDs would likely worsen if commercial health plans follow the CMS policy. This outcome is likely unless patients and physicians act now.

What Other At-Home Treatments are Available: Compression garments are another at-home therapy option. However, these garments are not covered by Medicare, are expensive and can often be difficult to apply, especially for aging or incapacitated patients.

What’s at Stake: Clinical evidence has shown that patients have a tremendous need for effective ongoing treatment to improve the edema and slow the progression of symptoms. The goal of lymphedema treatment is to prevent the condition from progressing to a severe level, characterized by skin breakdown, risk of serious infections, large and disfiguring lobular deformations and often loss of mobility. If enacted, the proposed policy change would delay or prohibit access to treatment until patients reach the most severe and perhaps irreversible stage of symptoms.

Ready to help-

Action must be taken immediately or Medicare will enact this restrictive new policy December 1, 2015. It is critical that the medical community, patients, and advocates speak out NOW. Here’s what you can do to help:

  1. Contact your legislator and urge them to request CMS withdraw this pending policy.
  2. Ask your physician or clinician to contact the local Medicare carrier’s Medical Director and legislators to express the opinion that Medicare withdraw this pending policy in order to uphold the standard of lymphedema patient care.
  3. Share opinions on this proposed policy and the negative impact it will have online at PCDpolicy.org and on social channels via the hashtag #PCDpolicy. Here are some sample tweets:
    • Medicare to significantly reduce treatment options for patients with lymphedema. Take action. www.PCDPolicy.org #PCDPolicy
    • More than a million lymphedema patients may lose their access to effective treatments. Take action. www.PCDPolicy.org #PCDPolicy
    • On Dec. 1, CMS will deny coverage to most lymphedema patients who need pneumatic compression devices. Act now. www.PCDPolicy.org #PCDPolicy

The deadline for action is November 30, 2015. Please contact your legislator here and then share this message widely so others may do the same! It only takes a few minutes to make an impact.

2 comments on “URGENT: Medicare to significantly REDUCE treatment options for patients with lymphedema. Here’s how you can take action and fight back!

  1. Jane Timberlake

    Obviously those people making the decision for Medicare do not have lymphedema themselves! Until you walk that road, you won’t have any sympathy for those who do. Nor will you give people with it a break. My lymphedema was caused by surgery from cancer. Wasn’t it enough to have cancer, surgery, radiation and then chemo? I guess not. But, of course, you don’t care. After all, it’s not you; compression hose helps a little, but not completely. The lymphedema machine helps, it helps to prevent cellulitis and extensive hospital stays and drugs to get rid of the cellulitis. But even at that, it can still happen. Prevention should be a priority for patience who have the daily battle with lymphedema. There are garments for nighttime also; and no insurance will cover that either. Who has thousands of dollars to spend on these 3 items for the person with lymphedema?? This is every day of my life, dealing with lymphedema and sometimes it’s better than others. I had lymph nodes taken out of my thigh and out of the pelvic area. So, I have extensive lymphedema. Couldn’t you make a person’s life a little easier by helping pay for these things. For me, it will be buying all three things several times a year (they do wear out with use, of course). More money to purchase the compression hose, thanks for helping out – nope. It’s not a one-time purchase people. I wouldn’t wish any of this on another person. But please give it serious consideration for those of us who live with lymphedema! Thank you for your time.

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