John Pelletier (pictured) knows he is going to die, and it may not be far off in the future.
The 56-year-old U.S. Marine veteran recently lived in the Seacoast but had to move into transitional veterans housing in Nashua. He takes 11 different medications daily and suffers from high blood pressure, chronic obstructive pulmonary disease, emphysema, diabetes and severe sleep apnea. He is tethered to an oxygen tank almost 24 hours a day. He has been designated as terminally ill and permanently disabled by the Social Security Administration.
"I've fought long and hard to stay on this side of the grass," said Pelletier, whose personal health decline began a few years ago. He was initially profiled in August 2009 during a series of stories in the Portsmouth Herald on the health care reform debate prior to President Obama's forum on the topic at Portsmouth High School.
Then, while living in a motel in Hampton, he admitted he played "Russian roulette" with his health when he could no longer afford to pay health care premiums. Within months he became sick with cancer and later was stricken with emphysema. Because he was sick, he lost his good-paying job as a truck driver and eventually his small farm in Derry. It went downhill rather quickly as he and his wife faced financial ruin. They were left homeless for periods, sleeping at times in their car at highway rest areas (he and wife have since separated).
Pelletier is in another fight — survive until the end with dignity and not in extreme poverty. He considers himself one of the cautionary tales of health care access for disabled and economically vulnerable people like himself, especially as states like New Hampshire look to cut more spending on major programs such as Medicaid.
"I don't blame the governor, I don't blame anyone because I know they are trying to cut the budget and save money," Pelletier said. "But do they want to nickel and dime me to my death?"
The battle for Pelletier today is that his health care costs far exceed his only source of income — a monthly Social Security disability check of $1,100. One government agency, Social Security, says he is eligible for full Medicaid coverage because he is terminally disabled until he transitions to full Medicare coverage sometime this coming spring. But under the state-managed Medicaid eligibility requirements, he must "spend down" $432 a month in deductibles before the state will cover the rest of the thousands of dollars a month in medications and oxygen.
He was told that the state had initiated the "spend down" fee for his coverage a year ago. He managed to get by for a while by submitting old bills for money he spent out of pocket. But he explains, it's become a choice of paying out-of-pocket for health care needs to meet the "spend down" requirement over essential needs such as food or a winter coat. In addition to the almost $260 a month he pays to stay at the veterans shelter in Nashua, he's required to pay the IRS $200 for previous tax problems that began, he said, when he first got sick. "I've reached a tipping point," Pelletier said.
In the midst of an historical budget crisis, the state may be reaching its own tipping point. According to the last filed state report on Medicaid spending, the health care program was the second-highest budget item (after education) at $1.3 billion in fiscal year 2008. According to the report, Medicaid covered 147,000 people at some point during that period, which is one of every 13 people in New Hampshire. Those covered included low-income children, pregnant women, parents with children, elders and people with disabilities. And every program that falls under the Medicaid umbrella comes with myriad financial requirements and various fees depending on income, which states like New Hampshire say are necessary to maximize resources and help the neediest.
New Hampshire is not alone in raising fees or tightening eligibility requirements as the recession led to a major increase in the number of Medicaid-eligible people and states were slammed with declining revenues. Despite increased amounts of federal support through stimulus spending, a record 20 states restricted benefits to their Medicaid programs, according to a nationwide survey published in September by the Kaiser Commission on Medicaid and the Uninsured.
Pelletier falls into one of the highest priced parts of Medicaid in New Hampshire. According to 2007 figures compiled by the Kaiser Commission, the disabled represented 16 percent of the state's 143,500 Medicaid enrollees but consumed 42 percent of the $971 million state Medicaid budget. Overall, Medicaid enrollment increased nationally by nearly 6 million people between the start of the recession in December 2007 and December 2009. In December 2009, 48.6 million people were enrolled in state Medicaid programs, an increase of 1.6 million over June 2009 and 3.8 million over December 2008, an annual growth rate of 8.4 percent.
As complex as Medicaid is today, it is expected to become even more so by 2014, when the program will expand as part of health care reform. In Concord, some Republican lawmakers are looking to cut Medicaid costs by privatizing management of the program.
Pelletier has appealed his "spend down" status with the state Department of Health and Human Services but, according to Pelletier, he has been told by his DHHS caseworker and DHHS officials in Concord that there is nothing that can be done to change the fee. When he asked for suggestions about what to do when his oxygen supply ran out, Pelletier said he was told to ask for help from the city of Nashua — which sent him to St. Joseph's Hospital, which said it might be able to supply him with a week's work of oxygen. He has contacted the office of Sen. Jeanne Shaheen, D-N.H., and was told there's nothing they can do because of the state regulations.
A DHHS spokesperson did not respond to a request for comment.
Pelletier has sought, but received limited help from, the Veterans Administration and feels uncomfortable asking for more, even if he were eligible for full coverage. "I see the vets who have come back from Iraq and Afghanistan lined up in the hallways," Pelletier said about his visits to the VA medical center in Manchester. "They need the help more than I do."
Pelletier is no stranger to the ins and outs of the medical bureaucracy labyrinth. He says free assistance a few years ago from the Families First Health and Support Center in Portsmouth "saved my life." He stopped smoking and worked to rebuild his health. He deepened his involvement with Families First by becoming a board member of the community health center.
He said he has read up on Medicaid regulations and found that if he moved across the border to Massachusetts, he would have 100 percent coverage within days. While he's positive for the most part, according to Pelletier, his frustration boiled over enough that he told an aide to Gov. John Lynch that if he (Pelletier) died in the next few weeks, "I will leave instructions for the undertaker to have my body delivered to his (Lynch's) desk." He said the aide was not amused by his bid to make a symbolic point about how real people are being impacted by policy decisions.
He has already cut back on a few medications and is working to get free medications from pharmaceutical manufacturers. He is working out a plan for a supply of oxygen tanks through the spring and he might be able to make it to April or May, when his Medicare coverage takes over. Pelletier said he understands that state DHHS workers have become swamped by increased case loads and staff cuts. His concern is that individuals less forceful or willing to work as hard as he has will simply fall through the cracks and die quietly out of sight. He said people don't realize how much health care rationing takes place already.
"We don't have equity of coverage. If I was woman with cervical cancer or a pregnant teenager, I would be 100 percent covered," he said. "At times like this, you better be your own best advocate or you will die."
Sunday, December 12, 2010
Seacoast online in N.H.:
Posted by BA Haller at 11:26 AM