Medicare Case a Win For Patients
With Chronic, Debilitating Conditions, Disabilities

Patients on Medicare with chronic conditions and disabilities will no longer have to show improvement to get skilled care and therapy services, according to a proposed settlement of a class action suit, Jimmo v. Sebelius. The settlement clarifies the standard for Medicare coverage, ending the practice of denying coverage to patients deemed no longer able to improve, which was never part of the Medicare statute.  Proponents say that Medicare patients likely to benefit include those with disabling conditions, including multiple sclerosis, Parkinson’s disease, arthritis, stroke, and heart disease.

“We were plaintiffs in this suit,” said David Chatel, Executive Vice President, Government Affairs, National Multiple Sclerosis Society, Washington, DC. Chatel was adamant that this is  “not a new benefit, but a clarification for patients that were inappropriately denied coverage.” Importantly, the Medicare statute never included an improvement requirement. However, patients seeking rehabilitative therapies (speech, physical therapy, and occupational therapy, for example)are frequently turned down because they failed to show progress. Once they fail to show progress, they are put into a “custodial” classification, not covered by Medicare. As a result, the practice has left patients likely to benefit from services abandoned by the system and at increased risk of further deterioration and hospitalization.

The Maintenance Standard

Under the settlement, Medicare must pay for:

  • outpatient therapy,
  • home health care, and
  • skilled nursing

if needed to “maintain the patient’s current condition, or prevent or slow further deterioration.”

Aditya Ganapathiraju sustained a spinal cord injury several years ago. At the time of the accident, he was extremely weak and did not use much physical therapy. “I was in a lot of pain and lost a lot of weight,” he said. “Had I been able to get therapy post injury, I might have made a lot more improvement much earlier. Ganapathiraju says that he has used physical therapy extensively to help him with transferring and strengthening, permitting him to do a host of things he never could have envisioned at the start.  For example, he now drives, went back to school and graduated from the University of Washington Seattle, and is involved in training and research in rehabilitation medicine at the University of Washington. He is also an advocate with a presence on YouTube.

Ganapathiraju added: “The notion of maintenance to prevent further degradation is well founded. You can quickly degenerate quickly post injury.” Among the many benefits that he sees include prevention of contractures [abnormal, permanent shortening of muscle], prevention of surgery, improving seat function, and activities of daily living.”

But what really troubles Ganapathiraju is the notion that a condition prevents people from functioning in day-to-day life. “It’s really a subjective standard and can prove a self-fulfilling prophecy,” he said.

Cost Considerations

Some accounts of the clarification of the Medicare standard claim that it will prove cost-prohibitive. “That’s kind of a red herring,” said Ganapathiraju. “Medicare financing is entirely a political decision. With just a modest increase in the taxes of the very rich, we could really afford Medicare for All.”

  • What’s your point of view? Share it here.

Brooklyn Health Needs Assessment In:
Listen and Share Your POV

Kings County Hospital Center opens Cancer Center, 2010. Credit: NYC Health and Hospitals Corporation

Tomorrow and Thursday, you have your chance to hear about a Brooklyn Health Needs Assessment that analyzed opinions from more than 700 North and Central Brooklyn residents on their healthcare. Many people involved in this process are dedicated to getting the public’s point of view on what is needed in hospital and healthcare across Brooklyn and building a rational healthcare system. Is it possible? Let’s hope so.

Lately, enormous Brooklyn pride has not extended to healthcare. In fact, nearly a year ago, the New York Times reported that, according to a group appointed by Governor Cuomo, “the NYS Health Commissioner should be given sweeping new powers to replace the executives and board members of private hospitals. ” A lot has transpired since then, including the closure of Downstate’s Mental Health Hospital, departures of some executives, and tales of patients languishing in hospitals for extended periods. Hospital mergers are uncertain. Whether the scope of the city’s public hospital inpatient and outpatient programs will remain intact, become privatized, or what, worries public health advocates. How much does poverty in Brooklyn stress the system?

Judy Wessler, who is with the Commission for the Public’s Health System, which goes by the byline, “putting the public back into the public health system,” sent out news of the meeting, urging people to learn and suggest ways to reconfigure Brooklyn health care.

Brooklyn Health Needs Assessment Results

will be presented at two meetings:

In Downtown Brooklyn and Bed-Stuy.

Wednesday, October,24, 2012, at Brooklyn Borough Hall, 209 Joralemon Street, between 4 and 6 pm. That’s tomorrow, as I post now.

Thursday, Oct. 25, 2012 at the Bed-Stuy YMCA, 1121 Bedford Ave., between 5 and 7 pm.

If you use tumblr, I talk about it there  too.

Have thoughts about changes that you’d like to see in Brooklyn? Share them here. Be sure to go to one of these meetings too.





In Her Own Words: A Young Woman With
Rheumatoid Arthritis Acknowledges Her Disability

Credit: National Institutes of Health.

How do young people cope with chronic, debilitating conditions, like rheumatoid arthritis and fibromyalgia? Patient POV interviewed Lisa Jaffe Hubbell, a young woman, who only last month acknowledged to herself, that she is disabled, and is unlikely to regain function. Lisa is also a successful writer and blogger, who blogs regularly at Landguppy Productions.

In this interview, she discusses her concerns about getting quality medical care, affordability of health care, and why the presidential election worries her.




Can you tell me how long you have had rheumatoid arthritis? Is this the key reason you are now disabled? Do you have other conditions that are contributing to your disability?

I was diagnosed 10 years ago now, and I think I always figured I’d get better. Or better enough to be able to do most of the things I want to do. Over time, as more and more drugs worked for a while and then failed – and none worked fabulously – I came to realize I’d never be the same. I’d never go for a long hike, be able to prepare for a dinner party without having a few hard days after it was over, go more than a day without a mid-day rest. I’m not the chief jar opener any more. I can’t always bend over to fill the dog’s water dish. And she’s big and pulls hard when confronted by a dastardly squirrel.  I can’t always hold her back.

My main diagnosis is sero-negative rheumatoid arthropathy, but I also have fibromyalgia, which rears its head when I have a flare. I also have an autoimmune thyroid disorder (Hashimoto’s disease).

What medications are you taking? Does your insurance cover these medications? Are they affordable?

I have had great medical coverage and mediocre coverage over the years.

The first few years, my insurance came from a small company and the copays became a significant burden. Biologics are thousands of dollars a month, and if I am responsible for a 10% copay, that’s hundreds of dollars. A couple of years I actually hit my stop loss limit, where you spend so much that the insurance company stops charging you copays. After that, I had insurance through Microsoft, which had no copayments. It was great. Now, I’m somewhere in the middle, with 10% copayments on my biologics –although I am enrolled in a program where the pharmaceutical company covers that copayment – and $15-30 copayments for other drugs. I have copayments for all my appointments, too.

My drugs change with my condition. Currently, I take Actemera, an infused biologic, every month. I take as little meloxicam as possible because my BP spiked about 18 months ago from the NSAID use and my kidney function started to look bad last month. I take Cymbalta and at night I take tramadol for pain. I’m off methotrexate because my liver function isn’t fabulous any more. My other meds are all related to side effects of the drugs I take for my arthritis. I take an anti-androgen called spirolactalone because my hair falls out from the atenalol I take for my blood pressure. I take omeprezol for my stomach when the meds upset it. One of my drugs – I have never figured out which – makes me sweat profusely, but only on my head. I’m not joking. Just my head. So I take a drug called glycopyrolate so that I’m not that sweaty girl when I go out in public. I also take fish oil, folate, B complex, CoQ10, a multivitamin, and because so much of what I take constipates me, a stool softener and Miralax.

Has dealing with insurance issues been difficult? How so?

My biggest problem happened at the end of summer, when a change of insurance companies forced us to complain a lot and often until they approved my infusion treatments. That I had been covered continuously and approved for the treatment by one insurer seemed to make no difference to the new one. My infusion was two weeks late, and a month later, I’m still trying to get back up to where I should be at this point after my infusion.

Is there anything that you’d advise people with your condition in terms of negotiating good healthcare?

Don’t be afraid to be a pain in the ass. And be sure that people understand that this isn’t just a little disease that causes pain. I have a shorter life span ahead of me, I am at risk for some pretty awful things like sudden gastric bleeds, sudden cardiac events, liver cancer. I could go on. This is a systemic disease that can impact not just my mobility, but my cognitive abilities, my vision. It will be, at least indirectly, the eventual cause of my death.

What kind of outside help do you get? If we lived in a more perfect outside world, is there any kind of help that you think you should be made available to you?

I have someone else do my garden and a cleaner twice a month. I pay for those services. I have a teenager who has to do a lot of fetching for me. Evenings are hard, and once I stop “doing” I find it hard to start again. I spent many years thinking I must just be lazy. It took a lot of therapy to stop those messages from running through my head. In a perfect world people would be more connected to their neighbors and none of us would be shy about asking for help. I’ve always been the helper, not the helped, so I don’t ask. I muddle through. My house isn’t as clean as it could be. I need the interior painted, but until I have 10 grand to spare, that won’t happen because I really can’t do it myself. Especially the taping off. Again, if I was more secure in my disability, I’d probably ask for more help. But that’s just too hard for me at this point.

As you became more disabled, have you had to make physical accommodations in your home, travel, work?  How easy or difficult were they to arrange? Emotionally, how have you dealt with these shifts?

I haven’t had to do much of any accommodating except for reducing the quantity of what I do. I use my teenager to bend over for me. I do find it hard to get into my car. I have people carry my groceries to the car for me. I try to avoid stairs. So if I go to a concert, I ask for disabled seating, which can be crappy, or can be with the sound guy (the best seats sound wise in the house). I haven’t taken a flight in a while, but I think next time I’ll ask for a ride to the gate and early seating.

Compared with other health problems like diabetes or hypertension, how do you think others look at rheumatoid arthritis?  Is there anything you would want other people to understand about this?

People don’t view rheumatoid arthritis as a bad disease. They hear arthritis and usually think “old people.” But that’s osteo arthritis. And while the joint damage is the same, the osteo version doesn’t come with other systemic problems.

It’s kind of invisible unless you are so sick you need a wheelchair or walker. People look at me in the disabled parking space and I’m sure some think I’m using my parents’ placard. But it’s mine, and while I don’t always need it, I usually use it. I view it as the only perk of being sick. I wish people understood how hard it is to just move – not always because of pain, but because of what doctors refer to as stiffness, but which I talk about in terms of feeling like I’m trying to move through thick mud or cement. And the fatigue is probably the most debilitating part of the disease.

How adequate are social supports in your life? In others with RA?

I have great friends and a wonderful boyfriend who understand what I can and can’t do. It can be an isolating condition, though, because you just don’t look sick.

Is there anything that you would want the world at large to know about a debilitating condition like RA and how you could live happier with it?

I think my biggest message is that when you see someone in a disabled space with a placard who looks like you, don’t assume they aren’t sick. When you see the house with the ratty yard that needs attention, don’t figure they are just lazy. The mom who never helps out in the classroom? You have no idea what her issues are. And ask if you can help with specific things. Asking if you can help with yard work, window washing, or something specific is better than telling someone to call if you need anything.

Because you live with RA, have you made any additional efforts to write a living will and advance directives than perhaps the next person not having RA?

I had a really bad flare last January and was sure I was going to die. I’d never felt that way before. So I redid my will and advance directives and trusts, talked to friends and family. I have every hope of living for at least another half century and try to live my life in a way to make that happen. I’m hopeful, though, not stupid

Are there transitions that may lie ahead that scare you?

I worry about what happens if Romney and the Republicans win. I haven’t gotten a divorce yet because I need my Wasband’s insurance. I can’t afford the kind of insurance I’d need to adequately treat my disease. I hope in 2014, the coming of insurance exchanges will allow me to divorce and find insurance that I can afford and that meets my needs.

Immigration and Healthcare: No Talking Points This Election

Immigrants on a steamship heading around the Statue of Liberty. Credit: Library of Congress

This week, I will be attending a two-day meeting on immigration and healthcare.  It’s not an area that I know a lot about and I am interested in your thoughts on the topic. Presidential candidates are not discussing the issues.

One worry that I have concerns privatizing of many public healthcare programs that have served immigrants well for centuries. America seems keen on privatizing right now, but the benefits and harms are not clearly known.

These issues are on my mind:

  1. Will immigrants who were able to get care in the public sector still have the same access once health care is privatized?
  2. Will preventive care, chronic care be available?
  3. Will more care be provided in the emergency room?
  4. Will shrinkage of the public sector mean that they will be sicker?
  5. What will happen to elderly immigrants? Will the healthcare system accommodate immigrants when they decline?
  6. What can be done in health policy and planning to bolster equity and fairness?

What are your thoughts on this issue?


Warning Signs

“Warning Signs” is a new concept for Patient POV. In it, I plan to point to unanticipated changes in health care that warrant a closer look. In some cases, all we see is a snapshot of something awry in one locale, but the change is ominous, has the potential to spread, and the public ought to know about it. I hope to point to exemplary shifts in medicine as well.

In the past week, I found these warning signs particularly worrisome, and applaud the work done by other reporters and bloggers to document them:

  1. If you thought the peanut butter-salmonella scare sounded bad enough on its own, think again. The Center for Science in the Public Interest explains that even though the FDA Food Safety and Modernization Act was passed in 2011, FDA has not implemented measures essential for food safety. “Deadline after deadline has come and gone with the agency taking no action, leaving consumers vulnerable and industry without guidance. Peanut butter and other foods are no safer than they were at the beginning of the President’s term, when he rightfully expressed concern about the peanut butter in his daughter’s sandwiches.”
  2. Concerns over the future of Medicare have gotten lots of attention, but the future of Medicaid has gotten far less scrutiny, particularly for seniors and the disabled. An editorial in the Tampa Bay Tribune takes up Romney’s mean, lean plans for Medicaid and nursing home residents.” The editorialists point to the public’s confusion that nursing home care is solely a Medicare issue and that Medicaid is strictly for the poor.  “But Medicaid is the program that provides long-term care to the elderly and disabled…It was Ryan who authored the plan to convert Medicaid from a strong federal-state entitlement to a block grant program to the states that Romney has incorporated into his campaign. The plan, passed as a budget blueprint by the Republican-controlled House, would gut Medicaid’s safety net and focus instead on cutting funds. The nonprofit Center for Budget and Policy Priorities says Medicaid funding would decline by one-third by 2022 under Ryan’s plan.” Take a closer look.
  3. Electronic health records have enormous potential for improving patient care and tracking health outcomes, but abuses in Medicare billing, identified in a NY Times article, are worrisome. Readers will want to be aware of:
  • cloning, where a doctor copies information from a previous visit to a later one, or duplicates information from one record to another;
  • upcoding, which The Times defines as exaggerating “the intensity of care provided or the severity of a patient’s condition to justify higher billings.”

In response to this article, Attorney General Eric Holder Jr. and Health and Human Services Secretary Kathleen Sebelius sent a letter to five hospital associations, noting “troubling indications” and their intent to prosecute for billing for services never permitted.

4. Ever wonder, why, all of a sudden, you see higher out-of-pocket costs for doctors’ visits. Consider this: the Cleveland Plain Dealer describes how ordinary doctors’ offices have become “hospital departments,” and along with it, come new facility fees for simple primary care.  In one example at Cleveland Clinic’s MetroHealth Center, , a patient was charged a facility fee of $1,655, about four times the doctor’s bill, for 30 minutes in an exam room to have a suspicious lesion removed. The patient states: “There is a much bigger issue and that’s that people won’t get the care they need because they can’t afford these charges. It’s totally wrong.”

“Warning Signs” is new. Let me know if you like it, think of something that I missed, and most importantly, your POV.