a conversation with Anne Rugg, executive director of AIDS Response Seacoast

Those living with HIV or AIDS in New Hampshire must endure social stigmatization while struggling to cover tremendous medical expenses.  

Those challenges will be compounded beginning in March, when the state loses $1 million in federal funds for drug reimbursement, primary care and other critical services provided by AIDS services organizations.

New Hampshire currently receives $1.6 million in federal Ryan White Title I monies distributed by the Boston Public Health Commission. Although the commission is not obligated to send a single dime to New Hampshire, it currently gives 16 percent of its “Ryan White” funds to its northern neighbor.

But New Hampshire represents only 5 percent of Boston’s caseload, and the commission decided more funding must be kept in state to deal with HIV issues in Massachusetts. Effective March 1, it will scale back more than 60 percent of the funds previously allocated to New Hampshire.

As a result, the N.H. Department of Health and Human Services will lose $500,000 dedicated to drug reimbursement for people using anti-retroviral drugs who cannot afford to pay for their medication. The monumental cuts could force the DHHS to consider putting HIV patients on a waiting list for the drugs that keep them alive.

“It’s unthinkable, because people will die on a waiting list,” said Anne Rugg, executive director of AIDS Response Seacoast.

The remaining $500,000 in federal cuts will be incurred by AIDS services organizations in Portsmouth, Nashua and Manchester. Rugg’s organization, which operates on an annual budget of $750,000, will lose $127,000. The nearly 20 percent budget reduction could mean the loss of client services such as mental health counseling, transportation, housing assistance, food services, client advocacy, peer support and substance abuse counseling.

Approximately 259 people are living with HIV or AIDS in Strafford and Rockingham counties, and most of them have low or moderate incomes. AIDS Response Seacoast, which formed in 1987, now has 102 clients who will be affected by the cuts. The organization’s nine staff members face harrowing challenges as they consider avenues to recover funding. 

In a recent interview with The Wire, Rugg discussed the impact of the pending cuts and how she and others plan to respond.

Will the state still be able to take care of its 1,300 or 1,400 HIV and AIDS patients in the wake of these funding cuts?

That’s literally the million dollar question, because Sen. Martha Fuller Clark has an appropriation bill for a million dollars to fund this deficit.

In 2006 the Legislature voted to put $180,000 toward HIV medications, which had never been done before. But it doesn’t sound like that’s nearly enough to cover the losses.

That goes in about three months.

Worst case scenario: Martha Fuller Clark’s bill doesn’t go through. What kinds of services are going to have to be cut?

The (DHHS) drug reimbursement is going to get cut. So the drugs that are keeping people alive and keeping them from getting full blown AIDS, keeping them at the HIV status, those will be cut by about half. And then some (AIDS Response Seacoast) services are totally eliminated: transportation, mental health counseling, food, nutrition counseling and housing assistance. Case management hasn’t been eliminated, it’s just been reduced by about 50 percent.

Obviously, HIV patients already face a lot of challenges both in getting adequate medication and services and a whole variety of social problems. Have many patients reached out to you with concerns about the funding cuts?

We have a newsletter that goes out and we let people know gently. People are freaking out, basically, because it’s their lifeline. If you have been working with a therapist to work on a drug addiction problem and you no longer have any money, this is the service that’s eliminated. You no longer have any money to work with that therapist or to deal with the depression and stigmatization that so many people are facing, and to just have to pull that cord is devastating. People get sick, they can’t work. They’re living on benefits —$500 a month—and then they have to pay rent in the Seacoast and buy food for their families and everything else. It’s devastating.

Are there still a lot of misconceptions about HIV among the public in terms of how it’s contracted and how it affects people?

Yes. People think you can get it from kissing, from doorknobs, from toilet seats. There’s a feeling that people with HIV deserve it because they did bad things. A lot of people are getting it because someone cheated on them, or they might have not had safe sex once. Well, who among us has not had safe sex once? (Laughs) And they just got nailed with it. So there’s this sort of blaming attitude that they deserve it. Or they’re gay, and there’s a lot of people who are just not accepting of that.

Is there a sense that the government is turning its back on this problem or taking it too lightly?

The Ryan White money funding got cut 5 percent this year, and that’s not a good thing; it should be increased 5 percent. I don’t think it’s high on the current administration’s agenda at all, based on their actions.

Are there other avenues AIDS organizations can take to raise more funds and make up for these losses?

That’s really hard. None of us have fundraising staff. For this organization, it’s about $127,000 that we’re going to be losing. I can’t go to my development person and say “could you please raise another 127,000?” I don’t have a development person, it’s me, and my board raises almost $200,000 a year for this agency and they’re exhausted. They don’t have the energy to raise another $127,000. We’re having a meeting, which I’m calling my “brain-trust” meeting. I can’t speak for the other ASO’s (AIDS service organizations), but I know that they don’t have the capacity to raise more money; they don’t have a fundraising staff. At one of them, the director is also the case manager. These are small organizations and very fragile organizations. They range in budget from the smallest at $140,000 to the biggest at $800,000. These are not big organizations with lots of extra staff. I’m having a meeting on Jan. 12 with people on my advisory council as well as the who’s who in the Seacoast who can brainstorm some solutions other than the legislative, in case that fails, because it’s not acceptable that we have to make these cuts to this agency. It’s totally not acceptable to me. If I have to lay off a person, that means 50 people are not going to get professional help. It’s unthinkable.

You hosted a breakfast recently at City Hall to discuss the funding cuts. Did that generate any solid ideas?

Unfortunately it was preaching to the choir. Everyone was very supportive. People signed letters to the governor and the New Hampshire delegation in Congress to ask for some special money. It was really helpful as a dry run for when we do the same thing in Concord, because we’re going to take it to Concord too so that we educate all the representatives, as many as we can. We’ll speak during the hearings, but before the hearings we want to do a legislative breakfast statewide to reach a wider audience.

So what’s the next step?

We’re getting partners with heart who can help us, because it’s not going to be easy to get a million dollars in the state of New Hampshire when they have (other bills to consider). There are a lot of things that are going to get attention. So we’re trying to get formal agreement to support this legislation with the municipal association, the hospital association, with the association of public welfare directors and the pharmaceutical industry. So that’s what I’m working on right now. Once the bill hits, and the hearings could be as early as mid-January, we need to be prepared, so this is the time for getting our partners up to date.

Is there anything else you would like to add?

If people want to get involved in political advocacy or send donations, please call me (603-433-5377, 1 Junkins Avenue in Portsmouth). We need all the help we can get. Or call your representatives or senators. I guess my final words are: where is the compassion in New Hampshire? We need it now. We need it big time.