Navigating Medicare as a Lymphedema Patient

Lymphedema & Medicare

Navigating the ins and outs of Medicare coverage for the treatment of lymphedema is not for the faint of heart. For decades lymphedema patients and their advocates have been fighting for their right to coverage. It has been a long and arduous uphill battle, and while there have been some small victories along the way, and there appears to be hope on the horizon, at present the quest for Medicare coverage remains a convoluted maze which, at its best, often falls short of meeting patients’ needs, and is full of subjective opportunities to deny coverage to honest people struggling with the financial burdens of lymphedema treatment.

Medicare is a federal health insurance program that covers most people 65 and older, as well as some younger people with disabilities or kidney failure. Working Americans pay into Medicare during their years of employment. Medicare’ coverage mostly includes acute conditions, – illnesses and injuries that will likely be quickly resolved. Additional optional coverage is available (for a cost) which covers some outpatient and preventative care and services, but the patient must meet stringent guidelines. Lymphedema patients find themselves at a distinct disadvantage because care of their illness is a matter of lifelong management, requiring an extensive team of interdisciplinary specialists and a variety of therapies, many of which Medicare does not cover. And those that are covered exist under an unrealistically low “therapy cap”. The passing of the Women’s Health and Cancer Rights Act in 1998 made it mandatory for all insurance providers to cover long term care for complications following breast cancer surgery, but primary, and other secondary lymphedemas do not fall under the same umbrella of care.

One of the biggest gaps in Medicare coverage for lymphedema is in the area of compression garments and supplies. Part of the problem is that compression supplies do not fit neatly into any existing category of coverage. Since Medicare is a government program, its guidelines can only be changed through legislation. Coverage of compression supplies varies by state. Some locales are reticent to include simple bandages or the services of a specialized professional, insisting any trained medical personnel can wrap a bandage. In areas where more sophisticated equipment, such a pneumonic compression devices, may be covered, the patient must first undergo weeks and weeks of more conservative therapy, without success, to be eligible, and then must again try a basic pump before receiving coverage for a more advanced version. Meanwhile months go by without proper care, and lymphedema advances.

One of the basic problems with lymphedema and Medicare is that lymphedema is categorized as a functional deficiency, when it is, in fact, and illness. Medicare tries to base its coverage on whether or not the deficiency has been resolved, which in no way measures the success or failure in the treatment of the underlying illness.

To qualify for any degree of coverage for lymphedema care, the beneficiary carries an enormous “burden of proof”. A claim requires extensive documentation from every member of the care team, physician’s notes, patient’s goals, duration and quantity of all services, proof that skilled services are necessary, objective measurement, referrals, confirmation of orders and deliveries of supplies etc…and they must all include intricately specific descriptions. Of thousands of claims filed between June and August of 2014 up to 98% were denied for reasons ranging from the use of an incorrect code to an illegible physician’s signature. Above the laughably low therapy cap, and after the endless process of collecting proof and documents, the denied lymphedema patient is left to pay the rising mountain of treatment bills. This results in an enormous financial and emotional burden.

While there are many mountains left to climb on the quest for fair coverage for lymphedema patients, there are small glimmers of hope. In 2014, California became the first state to include compression items on the list of Essential Health Benefits. In August of 2014 a class action suit was filed against Medicare charging a “Defective Review Process”. It was, of course, met with a strong defense. Although the affordable Health Care Act presently applies only to private insurance companies, it is currently under review for Medicare. It dramatically improves preventative care and the appeal rights of patients whose claims have been rejected. Perhaps most promising is the Lymphedema Treatment Act. The most current bill was introduced in March of this year. The LTA demands coverage for comprehensive treatment and at home medical supplies, including compression garments. The bill, which continues to gain strong support, applies specifically to Medicare, but hopes to set a precedent for Medicaid and private insurers. The hope is that lymphedema patients will soon be granted full coverage for the various treatments and supplies they need to manage their illness over the long term.

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