Thursday, February 26, 2009


If you could change something in the world, what would it be?

I have a couple of ideas.

First, what if the federal government gave tax credits to employers who allowed formerly disabled employees to work from home? There are a zillion jobs that can be done from a computer, phone, fax, and mail, and electronic networking is sophisticated enough so employees can be supervised and monitored even when working at remote locations. Let's take all the people on Social Security disability who want to work and give them jobs they can do at home.

Second, what if there was short-term disability, so people could take 6 months off when having a flare of a chronic illness or needing surgery and then go back to work without fighting for 2 years to get disability, and then feeling that they can't afford to go off it because they may never get it again.

What are your ideas? Jennifer

The Sick Ministering to the Sick

I have always felt that one of the reasons I am good at advocating for other patients is that I, myself, am a patient, so I "get it." Many of our clients have expressed that same sentiment. Indeed, it is not unusual for a patient with Crohn's disease to burst into tears when I tell them that they don't have to explain their symptoms to me because I know them all too well.

However, as I have struggled to remain sitting upright over the last 2 weeks, and found myself posting here less often than I should, I have been reminded of my weakness as a patient advocate: I'm sick.

This time, I needed a root canal, which then abscessed very badly, requiring that I take antibiotics that absolutely trash my gut and make me so tired I could cry. I've actually turned off my computer at 5 pm for the last several days -- something that is unheard of around here. I've managed to do the work that has had to be done, but I haven't had it in me to do anything "extra." Extra means anything from posting here to fundraising -- which really can't be counted as "extra" since it's vital to our existence. But I just haven't had it in me to focus.

Still, I know what I'm doing is better than nothing. We filed an insurance appeal on behalf of a baby who has a horrible digestive problem, whose doctors tried everything, and who needed a drug that was not normally prescribed for this use. The dad is a federal employee, so we had to file the appeal with the U.S. Office of Policy Management, which handles insurance appeals for federal employees. We learned at the end of last week that we won -- and that was a very good thing.

There's a huge public hearing at the legislature on Monday. I ought to go there at 6 am, get on line to sign up to testify, and stay all day and into the night to testify on at least three bills. One would create more "guaranteed issue" insurance plans in Connecticut -- plans that people could get even with a pre-existing condition as long as there's not a long lapse between their previous coverage and the new coverage. That's so important to the chronically ill since we all have pre-existing conditions. Another would start to direct the aged, blind and disabled who are eligible for both Medicaid and Medicare into Medicaid HMOs, which, it turns out, are more expensive than traditional Medicaid, and actually provide less care. Not good.

The third and most important is the Universal Health Care Foundation of Connecticut's proposal for universal health care (for you in Connecticut, it's Raised Bill 6600). What's remarkable is that they actually got chronic illness management right. They would set up a patient advisory panel that would help create and guide "medical homes" that would coordinate care, promote wellness, and manage chronic illness. These medical homes would see health care as extending beyond medical settings, to home and school and work. It is a truly patient-driven system. Talk about getting it -- although I suspect my constant harping over the last two years had far less to do with the excellence of this proposal than the knowledge and experience of the people who drafted the legislation, I could not help but feel downright joyous when I read the draft legislation. If only it would pass in its current form.

So clearly, I should go testify on these Bills. But I just can't bear the thought of spending 15 hours at the Capitol on Monday. I just don't have it in me. So I'm submitting written testimony. A compromise, at best, but better than nothing, I hope.

I wish I never had to make these kinds of choices. Really, at the moment, I belong in bed, not sitting at my computer writing this or doing anything else, for that matter. I'd be really depressed if I didn't know that today's the last day of these antibiotics, so I should start to feel better by the beginning of next week -- I hope.

I guess I think that, whatever I manage to do for the patients who need our help is better than nothing. But does the benefit that flows to our clients from the fact that I'm sick -- the fact that I "get it" -- outweigh the fact that I have to make these sorts of compromises when I'm not feeling well? I guess I can only say I sure hope so. Jennifer

Tuesday, February 24, 2009

What Kind of Neighbors?

At 8:15 this morning, I was meandering down Mountain Road in West Hartford about five minutes from my home on my way to a doctor's appointment. As I was curving around to the right, the car coming toward me appeared to be heading into me, so I swerved to the right to get out of its way. I hit the curb and flattened two of my tires.

I made a right turn onto the closest side street (Oxford Drive), where I called AAA and sat and waited an hour and one-half for the tow truck to arrive. At one point, a woman in a blue coat came and stood by my car with her dog on a long leash. She stared into my eyes for quite awhile. She made no effort to speak to me, did not ask me to roll down my window -- she just stared at me. Finally, I rolled down my window and asked if I could help her. She said she wanted to know what I was doing there, sitting in my car on her street. I pointed to my two flat tires. She laughed and walked away.

She did not ask if I needed help. She did not offer to let me use her phone or her bathroom. No cup of coffee for this neighbor. Just a laugh.

What kind of people are we, who treat our neighbors as if they were thieves? Jennifer

Friday, February 13, 2009

Absentee Blogger

Sorry to have been absent for a little while. This week will go down in the annals of my life as one of the craziest weeks ever! My wonderful assistant Celeste is on maternity leave, so I'm alone, which means I have more work to do than ever. And the worse the economy gets, the more people need help. Some are very desperate -- tragic, even. It's hard when I have nothing to offer them.

For example, I got an email yesterday from a lovely woman with lupus who went to a doctor, presented her insurance card, and proceeded to be treated by this doctor three times, to the tune of $1500. She didn't think twice about it until later, when she was informed that the doctor is not in her insurer's network. Nobody at the doctor's office told her that or she would have known she couldn't afford to see him.

Anyway, she wrote a letter -- no answer. She wrote an email -- no answer. She wrote another email -- no answer. Ultimately, she was taken to court, a judgment was entered, and now they are garnishing her husband's pay check (she's on disability) -- and now they can't pay their mortgage and could lose their house.

What can I do when there's already a judgment entered and a garnishment has been ordered? It's just awful.

It's getting to be more and more like that every day. So many people are getting laid off and losing their insurance. I credit Michael Guss for bringing to my attention Bureau of Labor Statistics that show that almost twice as many disabled people are unemployed as healthy people. Of course they're going to lay us off first -- we're expensive and we get sick and miss work. But try to prove intentional discrimination at a time when lay-offs are so rampant.

This is the first minute I've had all week to reflect -- and I just got an email that requires some attention before I can call it a night. I just wanted to make sure you all know I haven't gone anywhere.

In fact, we are going to be upgrading our website and incorporating the blog in there, so the blog will actually be ON the website, which I'm really excited about.

So don't forget about me; I haven't forgotten about you. I'll be back. Jennifer

Thursday, February 5, 2009


I have to rant. I can't hold it in another minute.

What happens to people when they are elected to public office?

Governor M. Jodi Rell of my home state, Connecticut, released her budget proposal yesterday. She proposes cutting the Permanent Commission on the Status of Women and other similar Commissions. These agencies don't cost much money, and the PCSW in particular has done amazing things over the years, from getting the legislature to require insurers to cover overnight stays for mastectomies and contraceptives to fighting for equal pay. Due at least in part to the PCSW, we have a woman Governor, a woman Secretary of the State, a woman Chief Justice of the Supreme Court, and lots of women in the legislature.

But what makes me madder than mad is her proposal to cut the Office of the Healthcare Advocate. This Office is funded entirely by an insurance fund -- money from insurance companies -- and not a dime by taxpayers. Cutting this Office doesn't save the state any money at all. In fact, the Office has saved Connecticut consumers $5.2 million by getting insurers to pay for medically necessary treatment.

So why does the Governor want to shut down this important consumer resource? Because the Healthcare Advocate has been an outspoken opponent of some of the Governor's health care policies. Simple as that. He opposed the Governor's Charter Oak Health Plan and her decision to force Medicaid and SCHIP enrollees into HMOs because the HMOs servicing those programs don't have enough doctors enrolled and, so, they can't provide the services that people need.

This isn't budget cutting; this is censorship. Politics.

And while I'm on the subject of politics, the stimulus package also is stuck in the mud. The House version includes COBRA subsidies and an extension of COBRA beyond the usual 18 months. It appears that some or all of this is being cut from the Senate version. The Huffington Post today says that there will be no COBRA extensions for people over age 55 to their 65th birthday when they are eligible for Medicare. Of course, people over age 55 are the ones least likely to be able to get another job, so they're the ones who need this help.

Ugh. Politics.

I don't know where any of this is going to end up. But I wish Senator Susan Collins and some of her friends would sit in my chair for an hour and listen to the people who are calling me and begging for help that does not exist. A woman with colon cancer who can't pay for a colonoscopy or surgery or any treatment because her husband refuses to help with her bills, and with his income she doesn't qualify for Medicaid. A young man with Crohn's disease who hasn't had a colonoscopy for nearly 2 years, has abnormal labs, and can't afford a colonoscopy. Or a diabetic stroke victim who has no income other than his Social Security payment, and no assets, and owes a hosptial $195,000 -- and they're taking him to court even though they get federal money for charity care.

None of this is rational. This is the underbelly of our democracy. Jennifer