In 2010 I shared My Story in support of The Lymphedema Treatment Act. The bill did not make it through the congressional process at that time and must be re-introduced. I am committed to using my newly acquired advocacy skills to help make this act a LAW.
WHY THIS LEGISLATION IS NEEDED:
- Lymphedema is a non-curable but treatable medical condition that results in an accumulation of lymph fluid swelling in parts of the body where lymphatic vessels and/or lymph nodes are damaged, nonfunctional or inadequate. Lymphedema affects an estimated 5-6 million Americans, with the majority of cases caused by cancer treatment.
- Untreated, or under-treated, lymphedema is progressive and leads to increased morbidity. Complete Decongestive Therapy (CDT) is the gold standard and only known course of treatment for lymphedema. CDT is a multi-modal treatment that is only effective when used in its entirety.
- Medicare currently covers all but the most critical component, the medically necessary compression supplies used daily in lymphedema treatment, citing they do not fit under any existing benefit category. As a result, many patients suffer from recurrent infections, progressive degradation in their condition and eventual disability because they cannot afford the compression supplies required to maintain their condition.
WHAT THIS LEGISLATION WILL DO:
Although this legislation relates specifically to a change in Medicare law, it would set a precedent for Medicaid and private insurers to follow.
Specific goals of the Act are:
- Provide comprehensive lymphedema treatment coverage, according to current medical treatment standards;
- Enable patient self-treatment plan adherence by providing necessary medical supplies for use at home, as prescribed for each patient (including gradient compression garments, bandages, and other compression devices);
- Allow for new treatment modalities to be considered for coverage as they become available and are approved;
- Reduce the total healthcare costs associated with this disease by decreasing the incidence of complications, co-morbidities and disabilities resulting from this medical condition.
In case you need a refresher on how the process works:
A quick one-page reference on the Lymphedema Treatment Act. To get involved visit: http://lymphedematreatmentact.org/
Why should the taxpayer have to pay for people like you who like to be so goddamn fat? If you want to weigh as much as a hippo pay for your own treatment. No wonder medical care is so expensive.
Hi Ed,
Lymphedema affects millions of people including children and cancer survivors. If you read my story you will see that proper treatment of lymphedema prevents more costly complications. So Medicare and/or insurance coverage of lymphedema treatment will lower healthcare costs. Also the legislation would require coverage of treatment, not provide for free treatment. Individuals on Medicare pay a monthly premium, and co-pays or co-insurance for treatment received. Lymphedema is a medical condition and treatment should be covered the same as other medical conditions.
Ed, for the same reason that they cover penis pumps and erectile dysfunction drugs. Maybe I should be saying “If you want to get it up, why should tax payers like ME pay for this treatment?” If you have actually read anything here, then you would know that people like Sarah don’t LIKE to be fat, that it’s not a lifestyle choice. It’s due to LEGITIMATE medical conditions. Go educate yourself and come back when you can have an intelligent conversation about this.
Ed, As someone who believes God is the creator and ultimate authority over this world I must first mention that it is offensive that you violated one of God’s commandments. (In the event you are not sure about which commandment you violated, you can click here.)
Secondly, because of my belief in God I want you to know that you are infinitely loved as a creation of our all-knowing, all-forgiving God. Jesus came to earth for the very purpose of sinners like you and I. He came to forgive you for sins.
I realize that humbling yourself to a God that wants to give you a gift like this may be hard. And really, grace is the issue at hand in all of your comments. Our government is constructed in such a way that it recognizes people are in all kinds of situations. While our government is not directly operating on biblical principles, in some ways they are what have influenced such things to even exist. We must care for people in our society who are unable to care for themselves – or have conditions that limit them from doing so. If we don’t do this, believe me, there would be much more strain on society than there is by assisting with basic needs. Social Security Disability and other government programs do not come close to meeting all needs. This is a misnomer that exists. Even the government will tell you that people in these programs often live far below poverty level. Last time I checked, poverty wasn’t a privilege. Typically, if people are able to do something else, they will not choose poverty. There are exceptions to all rules, but the majority of people when given options will not choose a life of poverty.
I’m all for paying for lymphedema treatment for cancer patients, children, and even people that are obese due to an untreatable metabolic disorder (which, according to another page on this website, the author does not suffer from). But we will bankrupt the country if we pay for every lifestyle-induced malady. You get more of what you subsidize.
To Teri, I’m not sure using the example of paying for penis pumps and viagra is a good analogy unless you can clearly show why an unhealthy lifestyle led to their need like you clearly and unambiguously can with morbid obesity and lymphedema . Nevertheless, we don’t pay for normal cosmetic surgery and I’m not sure spending tax money on non-vital penis pumps and viagra is fair either. We should probably cut it out as it is a luxury we can’t afford. As far as fairness is concerned, there are a lot of other medical priorities that get short shrift (like many kinds mental health care) that deserve to be paid for long before penis pumps and lymphedema.
Our priorities are crazy. We should be using our scarce resources first to target treatments that can actually make people well . If there is money left over after that, then we can talk about making those with self-inflicted illnesses feel more comfortable,
Ed,
I am the author, and I suffer from Lipedema and Lymphedema. What page on my blog are you referring to when you say “(according to another page on this website)”. Lipedema causes my excess weight, no I do not have any metabolic complications such as diabetes or high blood pressure from the excess weight, which is an indication that my obesity is NOT merely from poor lifestyle choices.
Sarah: You don’t attribute your obesity to a low metabolism anywhere i can find and you wrote this: “I have no metabolic issues due to my weight since my weight is due to congenital conditions lipedema and lymphedema.” in January.
I think calling lymphedema congenital in your case is a stretch unless you actually exhibited it as a child – did you?. It is usually induced by obesity (outside certain cancers). I’d argue, barring further evidence, that you were genetically predisposed to it and it was largely induced by overeating and/or lack of exercise. While lipedema is resistent to diet and exercise it is controversial as to whether it is impervious to it. Your own WLS history shows you can lose weight. You, a self-described “foodie”, gained a lot back which I’m sure tends to aggravate both these conditions. Nevertheless I have more sympathy for you because you were fat as a child. You weren’t responsible then and this set you up for your travails as an adult. I have far less sympathy for those who let themselves go as adults and thereby fall into these afflictions.
I’m an opiate addict – 15 years in recovery who must nevertheless take a base dose due to a spinal accident 19 years ago. That makes my affliction similar to those who overeat, who claim an addiction to food, but must eat nonetheless. Every day is a struggle for me against these cravings. But I persevere because to not do so would destroy my health and make me a greater burden on my friends, family, and society. Unlike you I am not on disability so i don’t qualify for Medicare and my private insurance, when I’ve had it, has been a joke as far as paying for the treatments that I needed. And frankly, in the end, I found that having to rely on myself, rather than getting government handouts, helped make me strong enough to cope with this illness and take treatment more seriously than somebody who had the treatment “handed” to them or subsidized. Because I had to scrimp and save for what treatment I did get as well as borrow from loved ones who are barely middle class made me more motivated not to waste the opportunity. Can you say the same for your WLS where you gained back most of the weight you lost? I don’t know, but I’ll bet you didn’t pay the full freight of your WLS or attendant surgery. What a waste of money.
Too often giving people a safety net makes them avoid the tough choices and makes them devalue the assistance. It’s easy to make excuses. I know, I did it for years until I had no options left. I see way too many fat people make the same kinds of excuses. But in the end, I realize I was better off not having more options. They just would have facilitated more excuses and enabled me to delay recovery further if I undertook it at all.
Ed,
It sounds like we have both overcome challenges in our lives. So I have to wonder what brought you to my blog to leave such a nasty disrespectful comment? I would think you have more important things to focus on in your life than posting hateful comments to someone like me who is sharing my story in order to help others? You see I have my lymphedema in a manageable state, if you’ve taken the time to look at the remarkable changes of my legs, and I have successfully fought for insurance coverage. Yes INSURANCE, you are correct my WLS was covered by Ohio Medicaid in 2003, after that I got a job and moved to Miami FL where I had regular insurance through my employer. I paid $20 co-pays 3x a week for my lymphedema therapy, I paid co-insurance amounts for my compression garments. I had to fight insurance to cover the needed treatment and items, there is where the need for government legislation exists. I also paid my share for the repair of the hole in my heart from a birth defect that went undiscovered for 28 years. I paid insurance premiums, and my contracted portion of ALL my medical care from 2004-2013, including paying for COBRA coverage during times of unemployment. Being on disability does not automatically provide for medical coverage, there is a two year wait for Medicare. And I have had not medical coverage since July 2013, I have been self paying for all my medical care and medications for the past 8 months, because my Medicare coverage has yet to be processed. And again, Medicare has a monthly premium and co-pays and co-insurance for services.
The fact I am alive right now was not a waste of money, how dare you suggest my existence is a waste?
Also, as to your doubt that my lipedema is a congenital condition. It is, just read any of the informational links I’ve provided. You question if I exhibited signs of the condition as a child, then you acknowledge I was an obese child. THERE IS YOUR ANSWER. Again, why do have so much hate towards me for being fat? Many people say I should delete comments such as the one you left me, but I say no the reason I share my story publicly is also to show the hatred I receive from complete strangers and I stand up against the bias that exists.