Interview with Maria Hardin – Vice President, Patient Services, at NORD, the US National Organisation for Rare Diseases
OrphaNews: Can you briefly explain the social and political background which has created the difficult financial situation in which many RD patients in the USA now find themselves?
There are many reasons why over 48 million Americans, including many dealing with rare diseases, find themselves without any health insurance. During the earlier part of the 20th century, most major employers provided their employees with health benefits. Since then, and over the past 20 years, skyrocketing costs for insurance premiums have caused many employers to drop health care benefits, or are forcing employees to pay a larger share of the costs. Workers on the low end of the socio-economic spectrum (many of whom take home only a minimum wage) are either not offered any benefits at all by their employers, or if they are offered them, find their share of the premium costs is prohibitively expensive, and choose not to join a health plan.
The US Government (both Federal and State) is cutting back in health service provision even to the lowest economic level citizens. In the States, insurance companies can pick and choose whom they will insure. People with chronic, life-debilitating conditions (many of these are rare diseases) find themselves classified as “uninsurable” even if they manage to pay the high premiums. Some states have established “high risk” insurance pools for their citizens but costs are high, and there is usually a 6-12 month waiting period for “pre-existing” conditions to be covered.
OrphaNews: Tell us something about Medicare and its administration in the States
Medicare was established back in the 60’s during the Lyndon B. Johnson administration. Both elderly (65 years and older) as well as younger, permanently disabled citizens were automatically enrolled in Part A. This covers hospital costs. Part B covers medical services but requires payment of a nominal premium, and is optional. Prior to the passage of Medicare Part D, if citizens wanted drug coverage, they could purchase “Medi-Gap” insurance policies from the private insurance industry that had to be sanctioned by our Centers for Medicare and Medicaid Services, the government oversight agency for Medicare. The U.S. Congress passed the Medicare Modernization Act in late 2003, and for the first time, a prescription drug benefit was offered starting January 1, 2006.
OrphaNews: What exactly is the “doughnut hole” everyone from the RD community appears to be talking about your side of the Atlantic?
It is the “share-of-cost” incorporated into the new Medicare prescription drug benefit program to off-set the total cost of the drugs to the government’s budget. Unfortunately, it is positioned at the “front end” of the beneficiary’s coverage year. The beneficiary pays the first $250 for his/her Rx (called a deductible); then s/he must pay 25% of drug’s cost and the insurance plan pays the other 75% until a total of $2,250 has been reached. After that occurs, the beneficiary must pay 100% of the Rx cost until another $2,850 is spent. This is called THE DOUGHNUT HOLE! If one adds $2,250 + $2,850 = $5,100 at this point, the catastrophic level of coverage has been reached, and the beneficiary pays 5%/month/per needed drugs for the remainder of the calendar year. Then the cycle begins all over again. In 2007, the out-of-pocket cost to the beneficiary extends to $3,850 instead of $3,600. Monthly premium costs will rise also.
If a beneficiary can prove that his/her annual income is less than a specific dollar figure, special help is provided by the government and there is no deductible, no doughnut hole, and only a minimal co-payment for each Rx filled. Of the 13.2 million beneficiaries eligible for low-income assistance, 9.5 million are receiving the subsidy. However, there is an estimated 3.1 million eligible beneficiaries that are not receiving assistance.
Read the full NORD interview
