The medical news about AIDS has been good in the last half year. But the media may have jumped the gun in speculating about the financial implications of new AIDS treatments. Editors desperate for copy of any kind have been sending out reporters to find The Story. In many instances their speculative stories are impacting people with AIDS financially more than any actual changes triggered by the drugs.

What's the real story when it comes to money, HIV, and the new treatments?

• In the January 20, 1997 issue of LGNY ("Changes Upending the Viatical Market in New York") I outlined how media hype has made getting cash out of life insurance difficult, risky - with wildly fluctuating offers. Cheap bank money has fled and individual investors who equate high risk with high return have rushed back in. Since it was the bank-financed companies who were licensed in NY, this has reduced the number of buyers here. In neighboring states without licensing unusually high offers abound. But if New Yorkers deal with those non-licensed companies the settlements, now declared to the IRS, would be taxable income. New Yorkers wanting to sell their life insurance are left with their faces pressed against the glass of the candy store - or they're suckered into deals that contain tax time-bombs.
  
• In this issue of LGNY we'll examine whether or not people with HIV are being forced back to work because of the new treatments and what is the safest way to consider working again without giving up hard-won disability benefits.
  
• In the next issue of LGNY we'll uncover some of the real financial costs in living longer when it comes to medical insurance, credit, and taxes. These areas are ignored by the press - but can present major financial pitfalls.

Overall Disability Benefits

The biggest current danger to disability benefits not from an army of insurance detectives - it's from stampeding panicky patients. The real harm occurs when people believe base their actions on media speculation and assume that either they'll be turned down if they apply for disability or that they now must return to work. I'm now getting calls from people who start out by saying "I that it's too late for me to apply for disability...." when they should take a disability time-out. Real harm occurs when people abandon their benefits before they're ready medically, mentally, and financially to consider work again.

Realistically speaking, many of the side effects, high anxieties, and delivery requirements of the new treatments actually make it more difficult to meet the demands of today's lean & mean work world. In many cases a time-out from work such as a medical leave under the Family and Medical Leave Act can not only boost health but ensure these treatments are followed to the letter.

Patient and physician both tend to forget that it's their data that determines disability in the end. Disability is determined on the actual inability to work - not the results of diagnostic tests.

In the current situation the traditional strong bias of the medical professions towards optimism helps healing but can contribute to people delaying justified withdrawals from the workplace or premature returns to work without proper planning and preparation.

Patients living purely in hope - perhaps along the banks of denial - may refuse the time, money, and stress-relief benefits that disability offers.

Disability determinations have always been difficult. The speculative stories are making an already complicated decision has become even more problematic. Patients who have developed the habit of relying on authority instead of managing their own illness may be more vulnerable to the hype of the drug companies and journalists.

Statistics tell the story: over 100 people a week now call the AIDS Project LA about back to work concerns - yet not a single cancellation of benefits had occurred.

Social Security

First, has anything changed? Interviews with Social Security reveal that policy and practice remain unchanged. Moreover, the criteria by which Social Security's decisions are made are written down - a very useful fact to know when applying. Changing them would require a lengthy technical and politically charged review process as in the last change in 1993.

The most common mistake in considering Social Security is assuming that an increase or a decrease in diagnostic measures results in automatic disqualification. The written Social Security criteria haven't used t-cell counts since 1993, don't use the CDC definitions for AIDS, and have only started to establish norms for viral-load results. What counts instead is automatic disqualifying diagnoses or symptoms that interfere with the ability to do work.

Social Security in fact has a program which allows recipients to experiment with a return to work without losing benefits. The Trial Work Period Program allows recipients to earn whatever they can up to a total of nine months in any ongoing five-year period - a month is counted as worked if more than $200 is earned. (Yet none of the press who've called me knew of the existence of this program.)

If the amount earned is more than $500 a month Social Security determines whether a consistent pattern of back-to-work earnings exists, whether the income was temporary, and whether health factors have really changed.

In fact, expenses incurred in order to work can be deducted from the total income received to arrive at a net amount. These expenses are fairly defined - and can include medical expenses, counseling, transportation, training, uniforms, etc.

Even if the person is declared to be working, a 10th month of Social Security benefits is paid for the month in which the determination is made. In addition the 11th and 12th month of benefits are paid - a little bit of seed money to cover the journey back to the workforce.

During any month in the following three years, if the person falls ill and cannot work they have but to call the social security office and provide medical evidence that illness has returned for their check to be sent out for that month. If they relapse, they can go back onto Social Security without reapplying or a waiting period.

This ability to try work can be turned to significant financial advantage. Many who have outlived their expectations sold their life insurance - and have now run out of money. If they were to return to work, they would usually be entitled to the group life insurance offered by the job - immediately upon employment. If they then had to leave work because symptoms resurfaced, they have a right to convert that life insurance - and replant their life insurance garden. Now they have a policy which would be perfectly saleable in two years if their health became poor; now they have rainy day money.

What's important is that this trial work period program is available to any one on Social Security - which is the bulk of those people who are out on disability.

Private & Group Insurance

Although private insurers are more difficult to monitor because their decision criteria are not published, interviews with private carriers have revealed little change in the disability decisions of insurers because of the new drugs; if you know of any, please let me know at 212/734-0941.

Simply having HIV doesn't qualify someone for disability, simply taking the new drugs doesn't disqualify them. Disability benefits are granted if a doctor shows that medical or mental symptoms prevent someone from working. The disabling characteristics of HIV stem largely from the unpredictable onset of its symptoms and associated illnesses and the debilitating side effects and special requirements of its treatments.

HIV often seems to hit those very abilities necessary for work in the 90s: inability to concentrate, impaired thinking, forgetfulness, slowness of pace, irritability, intermittent but profound fatigue, frequent doctor visits, stay-at-home symptoms such as diarrhea, nausea, night sweats, & fevers, sleep disturbance, the need to nap frequently, and weakness from weight loss, and depression.

There have always been bad insurers who resort to technicalities and tricks to get out of paying claims - just as there are excellent insurers who honor their promises in spirit as well as the letter of their contracts.

The tricks include suddenly stopping benefits - effectively shifting the burden (and cost) of proof again to the person on disability. For example, an aggressive case manager called upon a person I was helping to literally take up his bed and return to work - she didn't realize he was hospitalized at the time; doctor declarations, an expert medical witness, and legal threats put an (expensive) end to that.

With mental health claims, insurers may give approvals easily at the outset, but they often stop payment within the next 1-2 years. Claims for depression and back trouble always get extra scrutiny by insurers. Bad carriers do send field hacks around to eyeball people on disability - and on occasion go to the expense of hiring detectives - but usually only where the disability is visually discernible.

Insurers even offer lump sum settlements to get claims off their books. Some insurers will twist loosely-worded physician and patient statements; great care needs to be exercised on these legal documents. Don't volunteer extra information; I've had carriers question whether a trip to Greece was grounds for returning to work. Yet most insurers do little more than ask physicians to update the status of people with HIV monthly or yearly.

The potential problem is that the media speculation has in fact prompted insurer staffs to show they're on top of things. And I fear that the worst practices of managed care may be adopted by insurers at some point in the future. A disreputable insurer may use the hype to justify the unjust claim practices they've been practicing all along. The amber warning light is blinking in the world of disability insurers.

For now, most insurers know that treatment advances - and disappointments - are common with AIDS because of the virus's ability to mutate. Yet vigilance and defensive measures are vital. It's smart to keep a bad news journal to share or give a copy of to your doctor. It's not wise to downplay one's condition with a doctor. It's a good idea to make sure your doctor documents what you say. It's always a good idea to manage your own medical care by having a copy of your medical records.

Long-term survivors with private coverage should watch out for a re-evaluation of their situation if they were covered only for their own occupation for the first 2-3 years of their disability - and for any occupation after that. Any re-evaluation of disability status is fraught with danger.

Some private carriers have a standard procedure of inviting a person on long-term disability to consult a "rehabilitation specialist". It may be preferable to route such contact through your physician - who after all is the one who determines if you can work or not - or it may be prudent to get the advice of an attorney or a financial advisor experienced in HIV disability cases. Find out if you have a right to refuse such an appointment or refuse the rehab representative's recommendations. Since the rehab is hired by the insurer the may be a wolf in sheep's clothing. Rehab consultations should not be occasions to reopen the basis of the disability yet one more time.

Private coverage may have a feature like Social Security's trial work program: clauses covering recurrent disabilities. It may be possible to return to work or to attempt new work with the right to go back on disability payments without a new waiting period or extensive reevaluation if the attempt fails - within usually six months. Any attempt to do this should be made with the supervision of a professional experienced in disability insurance contracts. These procedures and their criteria are not documented in as much detail as with Social Security: proceed cautiously.

Many with the new treatments feel a burst of energy as never before. There is no need to suppress activity as long as it is entirely voluntary, is done as energy and symptoms permit, and generates no income. People with HIV should experiment with skills and vocational callings perhaps far different from what they were doing before taking disability benefits. A disability status does not mean living life in a prison, without meaning, and without involvement in the world.

I have budding photographers and writers who are stifling their creative genius out of an exaggerated fear that their avocation will be mistaken for a new vocation. One person is mothering his old research project towards completion - while he's on disability; he's able to do that simply because he shows up when his health permits, he naps when he wants, and he exits when his physical needs are greater than his creative needs. Others have founded nonprofit organizations that demand far more than any job had previously and who continue their disability benefits because they are working at their own pace, in their own way, without salary. However, I do know of one case where volunteer activity prompted an insurer to investigate; however the activity was judged not to be work. Again: caution.

Paid work demands consistent performance - something that's often not possible with HIV and sometimes not possible with the side-effects and requirements of the new drugs. Re-entry is a major financial transition with many ramifications where many things can go awry.

Perhaps the best way to channel the optimism, energy, and renewed desire to work is to gear up carefully for a return with new funds, new skills, and a plan. There are NY state programs that pay thousands of dollars for the educational fees and retraining expense for people on disability. There are programs where even people on welfare can put money aside tax-free to start a business - while continuing to receive benefits. Most universities have career centers and extensive computerized testing programs which often can be accessed free-of-charge.

Turning to such resources - and not just the want ads - can be a first concrete step when real individual progress is being made medically. Using the free time and priority status disability offers to train for a new career may be the best practical manifestation of the optimism and hope the new drugs offer.