Conflicting Reports on How People Do Long Term When Born with HIV

Two new studies have been reported over the past 2 weeks about how patients born with HIV are doing as young adults.

The first is from St. Mary’s Hospital in London; Young Adults Who Were Infected at Birth: the Complexities of Lifelong HIV are Increasingly Apparent. It presents health data on 58 perinatally infected young people. Two thirds of the people in the study were taking ARV medication. The report indicates many medical and psychological complications, and implies the complications were in the one third of people who were not adhering to treatment.

Adherence to medication is challenging for this group and a problem which drives many of the health complications described above.

Individuals who had good self-reported adherence in childhood generally maintained the same behaviour as young adults and continued to have good treatment response. Similarly, those with poor adherence in childhood most commonly continued to have difficulties, with sub-optimal clinical outcomes.

The researchers suggest that as adherence patterns appear to be established in childhood, it is essential to support adherence when children begin therapy in order to promote long-term adherence and survival.

The second study is by Dr. Russell Van Dyke at Tulane in New Orleans; Kids Born with HIV Growing Up Well. This report also indicates that 2/3 of participants had undetectable viral loads. The other 1/3 have complications although the doctor indicates

“their disease can be treated as chronic, more akin to diabetes than cancer. Van Dyke expects many of the patients in his study to have a normal or near normal life span.”

“These kids are doing very well,” Van Dyke says. “They’re going to school and doing all of the things that kids should do. Hopefully, they will be living 50 or 60 years or more, so what’s going to happen 40 years from now is the real concern.”

Life Expectancy for Children Born with HIV

One of the big questions I hear when people are considering parenting a child with HIV is “what will their life expectancy be?” Dr. McComsey says “relatively normal life expectancy” and Dr. Gallant says “close to normal”. Medical professionals don’t know the exact answer because children born with HIV/AIDS are nearing 30 years of age at the most (HIV/AIDS was first discovered in this country in the early 1980s). Sadly, many of the children born with HIV in the early days died of AIDS because there were no adequate treatment options. However, children born today with HIV have an excellent prognosis due to the antiretroviral medications. Studies regarding life expectancy are done on adults and it is extremely important to remember that the participants in these studies are often in vastly different situations than children growing up in adoptive families. For example, they have other risk factors that affect their life expectancy in addition to HIV such as poor nutrition, co-infections, IV drug use, homelessness, low socioeconomic status, unhealthy lifestyles and poor adherence to treatment.

Only the most recent studies are worth reading since HIV/AIDS research changes all the time as the treatment options get better. Studies from 2005 indicate anywhere from 6 years less than normal to 21 years less than normal. The average between these 2 extremes is 13.5 years less than the normal US lifespan (78) which is an average life expectancy of 64.5 years (2005). These studies are already 6 years old and the numbers get higher all the time as the medications get better. This means that  children born with HIV can live long enough to meet their grandchildren. The best thing we can do to increase life expectancy is encourage our children to lead a healthy lifestyle and diligently adhere to their medications.


China Implements ‘Treatment as Prevention’ Strategy

The World’s most populous nation embraces groundbreaking HIV/AIDS prevention strategy. It is implementing a “treatment as prevention” strategy. The proposal calls for widespread HIV testing and treatment. The strategy is based on the results of British Columbia Centre for Excellence in HIV/AIDS (BC-CfE) research published last summer in the Lancet (which I reported about here). Research results showed that the benefit of highly active antiretroviral therapy (HAART) extend beyond prolonging survival, to significantly preventing the transmission and spread of HIV.

“The expansion of HAART treatment throughout the world is critical to containing and curbing the global HIV and AIDS pandemic,” said Dr. Julio Montaner, director of the BC-CfE. “We applaud China’s leadership in implementing treatment as prevention to save lives, prevent infections and in the long-term save money.”

Click on the image to read the press release.

Children Born with HIV who are Now Adults

There is a new section of links in the right column titled “Grew Up with HIV”.

Now that HIV/AIDS has been around for nearly 30 years, there are adults who have had HIV all their lives. Thankfully, they are speaking out about their lives and inspiring others. These people were born at a time when anti-retroviral medications were not yet available (before 1996) and they know the heartbreak of losing loved ones who did not live long enough to access ARVs. Those who survived the early days with very few treatment options eventually got access to ARVs and many lead normal healthy lives now. However, some adults in this same situation were not as lucky and their disease progressed to AIDS before ARV treatment was an option which has lead to health problems or cognitive issues. Others did not grow up in advantageous living conditions (some examples – parents who were not attentive to medication regimes, neglectful situations, and/or living with HIV+ parents in extremely low socio-economic positions without nutrition among other disadvantages)…their stories can also be found online, but I am choosing to feature individuals who grew up in optimal environments similar to those that adoptive families provide, as I feel their stories are most relevant to our topic. This post is open to comments and discussion.

Hydeia Broadbent Interview

I interviewed Hydeia Broadbent and published the post on my old blog in February 2009. It’s not an active link anymore so I’m republishing the interview here with a few extras.


Interview With Hydeia Broadbent

Hydeia ~ Thank you so much for this opportunity to interview you. I admire you and your family so much. Your story is fascinating to me, as this website is all about finding homes, families and sponsorship for children with HIV/AIDS. To my knowledge, you may have been one of the very first babies in the United States born with HIV and adopted. What year were you born? Also, do you or did you know of any others born before you who had HIV and were adopted or fostered?

I was born in 1984 to a woman who was addicted to intravenous drugs. I was left in the hospital and turned over to the state of Nevada.  My family was told I was the first child born with HIV in the state of Nevada.  I don’t know of any children born before me who were adopted. My mother worked together with parents of children born after me to start a daycare center for children infected and affected by HIV/AIDS.

You and your family have been very open about your HIV status since you were first born, which was extremely rare in the 1980s and 1990s. Did you ever feel upset that your parents didn’t give you a ‘choice’ about disclosure?

I feel my parents made the right choice because I’ve seen so many kids my age dealing with depression and trying to cover up lies because they were keeping secrets about why they were at the hospital or why they were taking medicine. Being public showed our family who was loyal and which friends weren’t quite as trustworthy. Take me as I am! Being public made it easier for me as an adult dealing with dating because I never had to sit someone down and have the “ I have AIDS speech.” They already knew what they were getting into…well somewhat!

Things were much different 25 years ago then they are today, and although the stigma is still great, I can’t imagine how it was when you were growing up. Would you mind sharing any stories about how you were treated and how that compares with a child growing up with HIV now?

For me growing up, I really did not face any problems which I can remember. My mother and father dealt with some things, like my kindergarten teacher spraying me with bleach because I sneezed and she mistakenly thought the virus was air born! In another incident, people changed seats on an airplane because I told them I had AIDS after they nosily asked why I was taking medicine.  My mother played it off and said “oh look we have an extra seat – now we can stretch out and get some sleep”. My parents never made a big deal of things when people were acting weird because they did not want me to feel like something was wrong with me.

Do you remember any doctor’s predictions on how long your life expectancy would be? What is your prognosis now?

My prognosis now if fine; I just have to take care of myself and stay on top of my medicine and eat well.  When I was three, the doctors told my parents I would not make it past the age of five! I even coded blue a few times, but after living past what the doctors feared would be my final days, we decided that no one really knows when your time is up until your time is up.

You must have been involved in many clinical and drug trials? How have you handled all the medication over the years? Do you get pill fatigue? Have you been able to take a ‘break’ from meds?
Some people who are infected with HIV/AIDS are able to not take medication for a while without any real health problems but I am not one of them. I tried taking a break a few years ago but my viral load got too high.  When I was younger, taking medicine was something I always did and never knew anything different so I did not complain about taking pills until I got older and wanted a break. Now I would rather take pills everyday instead of being in the hospital and kept from my everyday life.
I understand you have been an AIDS activist since you were very young. Can you tell us about that experience?
I love being an activist and using my voice and life to try and help as many people as I can. I am willing to work with as many people as possible because my story might stop someone from becoming infected. Also if I can help someone who just found out they are infected or a person who may be sick and depressed and feel like giving up, I find it gives hope to people to look at my life and see that I am 25 and no one believed I would be here today!  Over the years I have gone to so many places I cannot name them all, and I have been on all types of television shows and in magazines, but what I love most is speaking to youth and answering questions they have which they do not feel they can ask their parents.

How old were you when you started dating? Can you tell us a bit about the transition of becoming a teenager, an adult and how HIV relates to an already confusing time of adolescence and dating?

I really did not date much when I was a teenager because I was traveling and going to various conferences. I only went to a public high school for my senior year so that kept me from the drama most teens go through at that age. My first boyfriend was when I was about 16 and we dated for about a year and he traveled with me a few times.  I have been with my present boyfriend on and off since 2003. He travels with me when he can and he comes to my doctor appointments with me and picks up my prescriptions for me when I do not feel well or when I am traveling. He is a big part of my everyday life.
Do you think you might have a family some day?
I believe I will give birth to a child in a few years when I own a home and have some more money saved, then maybe a year or two later I would like to adopt a child because so many kids here in America need homes.

Have you ever had any problems receiving medical care including medications? I think some people worry that their adopted children will have comprehensive coverage until they are 18, yet are concerned about health insurance as they become adults.
No I have been okay with receiving health care and getting my medications but I have had close calls before where I was unsure if I was going to be able to get health care. Sometimes it is very scary when wondering where you are going to get health care or help paying for medication, but there are now so many outreach programs and centers that provide help or can point you in the right direction.

Hydeia Broadbent was one of the earliest pediatric HIV patients at a time when only a handful of children had the infection. At the time, AIDS was just being named and HIV, the virus that causes AIDS, had not yet been discovered. To date, about 9,000 children have contracted the virus from their mothers in the United States and more than 2.3 million worldwide. Hydeia is a living testament to the incredible progess that has been made in HIV research and treatment. More information about Hydeia’s life can be found in the mother/daughter memoir You Get Past The Tears (synopsis) and you can also see her on Extreme Home Makeover. She can be reached through  Many thanks to Ms. Broadbent for her time and for her honesty and insight.  I hope that this interview will show the excellent quality of life of people born with HIV and lead some adults to a child with HIV in need of parental care.

Here are the extras:

UNICEF Report – Blame and Banishment: The underground HIV epidemic affecting children in Eastern Europe and Central Asia

Alexandra - 17 months. Copyright UNICEF/NYHQ2004-0698/G. Pirozzi

The following are some excerpts from the UNICEF Report – Blame and Banishment: The underground HIV epidemic affecting children in Eastern Europe & Central Asia. Emphasis added to highlight the areas I find most relevant to this blog topic.

“This report brings to life the experiences of children, families and young people living with HIV.  It gives voice to their stories of despair, stigma and social exclusion, as well as to their courage and hope.

Access to antiretroviral treatment is still among the lowest in the world, and stigma and discrimination that violate the basic rights and dignity of people living with and affected by HIV, including children, are hampering further progress in prevention, care and support.

Eastern Europe and Central Asia are the only parts of the world where the HIV epidemic remains clearly on the rise. Increases of up to 700 per cent in HIV infection rates have been found in some parts of the Russian Federation since 2006. Women, who now account for some 40 per cent of new cases compared to just 24 per cent under a decade ago are increasingly affected by HIV, as are children. The total number of HIV-positive pregnancies has doubled during the past five years.

Children born to HIV-positive mothers suffer the consequences of these prejudices, experiencing a much higher likelihood than other children of being abandoned at a hospital, or being left to live in isolation at a specialized care institution. Across Eastern Europe, children born to HIV-positive mothers have a much higher risk than others of being abandoned at or soon after birth. Their removal from their mother, their family and community is an expression of both the stigma surrounding the HIV disease and of the multiple hardships that overwhelm many disadvantaged women.

Currently, the region has the highest rates of family separation in the world, with approximately 1.3 million children deprived of parental care and isolated from family and community, even though the vast majority still have biological parents. The relinquishment of children to institutional care is an established solution for families in distress – a practice that has historic roots and continues to the present day, despite strong evidence of its negative consequences for children’s well-being.

The infrastructure of institutional care remains as that of the Soviet era. Infants who are left in maternities are transferred to baby homes (Dom Ribyonka) where they stay until the age of three. If they are not adopted during these early years they are transferred to children’s homes (Dyetski Dom) for the next four years and then onwards to ‘internats’ for 7- to 18-year-olds. This movement through different institutional settings leaves many children poorly equipped to cope or find jobs once they leave and highly vulnerable to abuse and exploitation. Young people graduating from these institutions have much higher rates of alcoholism, drug use, criminal behavior, unemployment, imprisonment and suicide than their peers.

For children with HIV who live in institutions, the chances of being adopted are particularly slim as a result of widespread prejudice. Elena, from Ukraine, who adopted two HIV-positive girls (aged 6 and 7), shares her experience:

From the moment I saw them, I immediately knew that I would love them like my own children. Imagine my surprise when the adoption agency tried to convince me not to take these two girls! They said to me, ‘Why would you want such a headache, you should take some other children.’

Despite growing availability of alternative family-based solutions, residential care is not diminishing. In recent years, the proportion of children in residential care has increased.

In the Russian Federation and Ukraine, about 6 to 10 per cent of children born to HIV-positive mothers are abandoned in maternity wards, pediatric hospitals and residential institutions, with little opportunity for foster care, adoption or family reunification. While the relative proportion of children abandoned at birth by these mothers has been decreasing, the number of HIV-positive pregnancies has grown, creating a steady increase in the cumulative numbers of children abandoned to state care overall. The reasons for infant and child relinquishment by HIV-positive women are complex. An in-depth qualitative study of HIV-infected mothers, their families and health-care workers from four regions in the Russian Federation concluded that HIV was not the primary reason for infant abandonment. Rather, the key factors increasing the likelihood of abandonment were: unwanted pregnancy, poverty, lack of family support, drug and alcohol use, fear of the infant having birth defects or disabilities, and an inability to support the costs of caring. Of these, the strongest predictor was unwanted pregnancy.

Within the context of child-care reforms in many countries of the region, support to biological families to keep their children, prevention of abandonment, and the development of family-based care alternatives to institutionalization have increasingly been a focus. UNICEF has been a key partner in many such initiatives. In Ukraine, for example, almost 90 per cent of maternities have established linkages with social services to address child abandonment. A number of ‘Mother-Baby Centres’ have been opened by state social services to support new mothers in difficult circumstances. Many of the mothers are teenagers or single women who have been rejected by their families. Reports show that over 60 per cent of mothers who are in contact with the centres change their minds about abandoning their babies. Similarly, projects led by NGOs, such as the MAMA+ project of Health Rights International with the Ukrainian Foundation for Public Health, have provided support for HIV-positive and drug-using pregnant women and mothers to enable them to keep their children. A range of client-oriented services are provided, including day-care centres, family visits, referrals to health-care facilities and drug and alcohol addiction counseling. The All-Ukrainian Network of People Living with HIV/AIDS has also taken action to find family-based care options for abandoned HIV-positive children living in institutions. Finding adoptive parents has been particularly challenging as a result of many legal obstacles, widespread social misconceptions about HIV, and the high levels of stigma and ignorance associated with the disease. As expressed by one of the project coordinators from the Network: “We have looked for adoptive parents for over two years. It is extremely difficult to find such people. We believe we need to find such families and provide them with all the necessary support. The majority of HIV-positive kids have suffered through living in orphanages and need special care.”

Yana was just eight years old when she started living on the streets. Her father, an alcoholic, died young and she was separated from her mother who was sent to jail. Originally from Moldova, one of the poorest countries in Europe, Yana wandered through several towns and eventually ended up on the streets of Odessa, Ukraine. Her ‘home’ was a makeshift shed in a park. A group of 20 street children built the hideout themselves, the youngest only six years old. They begged, stole and prostituted themselves to survive. Drugs helped them cope with their lives. Through sharing needles they also shared HIV. Yana fell sick and died at the age of 13 on the streets of Odessa, addicted to drugs and infected with HIV…”

A recent study of 15- to 19-year-old street children in St Petersburg, involving 313 participants, found that almost 40 per cent of them were HIV-positive. High levels of HIV prevalence have also been found among street children in studies in Odessa and Donetsk, Ukraine. While there are no reliable estimates of how many children are without adult supervision, living and/or working on the streets, experts agree there are probably over one million in the region. The large majority end up on the street as a result of running away from physical and psychological abuse within families, or from state-run orphanages and shelters. Once on the streets, sex and drugs become part of these children’s daily reality and other street dwellers compose their social network. Almost all street children report being sexually active and the majority have multiple partners, both through sex among peers and through selling sex.

In 2008, antiretroviral therapy (ART) coverage among adults in the region was estimated to be only 22 per cent, the second lowest in the world. The main success of health systems in the region has been the high level of coverage of services to prevent mother-to-child transmission of HIV (PMTCT) and access to pediatric AIDS treatment. An estimated 94 per cent of pregnant women have access to ARV prophylaxis. For HIV-positive children, ART coverage is estimated to be 85 per cent.

Responding effectively to the HIV epidemic in Eastern Europe and Central Asia will require a paradigm shift from blame and exclusion to support and inclusion. A rights-based approach provides the basis for that shift. As stipulated in the Convention on the Rights of the Child, all rights apply to all children without exception, and States have an obligation to protect all children from discrimination and to take positive action to promote their rights. In building and sustaining the response to HIV, governments must take the lead in developing approaches that are firmly rooted in the needs and rights of children and young people. Developing a rights-based response to meet the needs of children and young people will also require additional funding. Combined international investments in HIV in the entire region do not come close to investments in a single country such as Ethiopia that has a similar number of new HIV infections annually as the Russian Federation or Ukraine, and which also falls amongst the top twelve most affected countries in the world.”

Revaccination May be Necessary for HIV-positive Children

The AIDS Beacon

Revaccination May Be Necessary For HIV+ Children

Revaccination against vaccine-preventable illnesses, such as measles and tetanus, may be necessary in HIV-positive children after starting antiretroviral therapy, according to researchers at the John Hopkins School of Public Health.

In addition, children on antiretroviral therapy may need repeated vaccines or higher dosages to retain their immunity against illnesses over the long-term.

“It’s clear that many HIV-infected children on treatment remain susceptible to vaccine-preventable diseases and would benefit from revaccination,” said Catherine Sutcliffe, lead author of the review, in correspondence with The Beacon.

“Most children receiving treatment responded well to revaccination, although levels of immunity still decreased over time,” she added.

Previous studies have shown that children with HIV often do not respond as effectively to vaccines as children without HIV. This can lead to weaker immunity to vaccine-preventable illnesses or loss of immunity over time.

Starting highly active antiretroviral therapy (HAART) helps restore the immune system and boost immune responses. However, it is not known whether this helps improve immunity from vaccines that were given before starting antiretroviral therapy, or whether children starting HAART instead need to be revaccinated.

To answer this question, the researchers examined previously published studies in which children were vaccinated before starting HAART and their levels of immunity were measured again afterward.

The researchers found that results were mixed, with some children showing improved immunity after starting antiretroviral therapy while others lost their vaccine protection.

For example, one study of children vaccinated with the measles-mumps-rubella (MMR) vaccine found that 40 percent of the children who failed to achieve a vaccine response before starting HAART gained immunity afterward.

However, the same study also found that 53 percent of children who had gained immunity to MMR before HAART lost their immunity after starting antiretroviral therapy.

Click the photo to continue reading…

Updated Guidelines for Treatment of HIV+ Children and Teens

The AIDS Beacon

HHS Releases Updated Guidelines for Treatment of HIV-Positive Children and Teens

The United States Department of Health and Human Services has released an updated version of its “Guidelines for the Use of Antiretroviral Agents in Pediatric HIV Infection.”

The guidelines contain updated recommendations in several areas, including diagnosis of HIV in infants, start of antiretroviral therapy, selection of antiretrovirals, and adherence to antiretroviral therapy in children and teenagers.

The guidelines now also include a rating system to indicate the strength of each recommendation, and formatting changes have been implemented to improve readability. For example, a section on drug side effects in children that includes information on risk factors, symptoms, preventative measures, and treatment options is now presented in a table format for ease of use.

The guidelines are intended for use by doctors and other health care professionals when treating HIV-positive children and teens.

Key updates to various sections of the guidelines are summarized below.

Diagnosis Of HIV In Infants

The guidelines now recommend HIV testing at birth for infants who are at high risk for contracting the virus. This includes babies born to HIV-positive mothers who did not receive prenatal care or prenatal antiretroviral therapy, or who had HIV viral loads (amount of virus in the blood) greater than 1,000 copies per milliliter near the time of delivery.

HIV infection in adults is usually diagnosed by looking for antibodies – proteins made by the immune system to help identify and fight bacteria and viruses. In infants, however, tests for HIV antibodies may lead to false-positive results, as children of this age group often still carry their mothers’ HIV antibodies.

To avoid a false diagnosis, the guidelines continue to recommend tests that detect the virus itself to determine HIV status in infants younger than 18 months. This includes HIV DNA PCR assays and HIV RNA tests, both of which can detect the HIV virus directly.

The guide also continues to recommend that babies be tested for HIV at 14 to 21 days after birth, age 1 to 2 months, and 4 to 6 months of age.

Start Of Antiretroviral Therapy

Suggestions for when to initiate antiretroviral therapy vary according to age group.

Antiretroviral therapy is now recommended for children older than 12 months who have normal CD4 (white blood cell) counts but HIV viral loads of 100,000 copies per milliliter of blood or higher, even if their symptoms are mild or nonexistent.

For children under the age of 12 months, the guidelines continue to recommend starting antiretroviral therapy regardless of CD4 count, viral load, or the presence or absence of symptoms. Several studies have shown that starting therapy early in children of this age significantly reduces the chances a child will progress to AIDS or die.

In children with normal CD4 counts whose HIV viral loads are less than 100,000 copies per milliliter, and who have mild or no symptoms, initiation of treatment can be either considered or deferred.

Selection Of Antiretroviral Drugs For Treatment Naïve Patients

As with adults, all HIV-positive children should be treated using combination therapy that includes at least three different antiretroviral drugs from two different classes.

However, the updated guidelines now indicate that non-nucleoside reverse transcriptase inhibitor (NNRTI)-based therapy is not recommended for children younger than 3 years of age who have been exposed to single dose Viramune (nevirapine).

Click the image to continue reading…

No more pre-existing condition exclusions for children

Starting September 23, 2010, there is a new policy which prohibits children with pre-existing health conditions from being excluded from enrollment in health insurance policies. Information can be found on Here are some Questions & Answers about the policy from the US Department of Health & Human Services.

On June 28, 2010, the Administration published the interim final regulations prohibiting new group health plans and health insurance issuers in both the group and individual markets from imposing pre-existing condition exclusions on children under 19 for the first plan year (in the individual market, policy year) beginning on or after September 23, 2010.   These regulations apply to grandfathered group health plans and group health insurance coverage but do not apply to grandfathered individual health insurance coverage that was in existence on March 23, 2010.

Accordingly, for non-grandfathered individual health insurance policies, children under 19 cannot be denied coverage because of a pre-existing condition for policy years beginning on or after September 23, 2010.  These questions and answers will assist issuers with implementation of this requirement.

Question #1: Will children in child-only individual market health plans today be affected by the new access to these plans for children with pre-existing conditions?

A: Child-only insurance plans that existed on or prior to March 23, 2010, and that do not significantly change their benefits, cost sharing, and other features, will be “grandfathered” or exempt from these regulations.  As such, children enrolled in grandfathered child-only plans today are unlikely to be affected by the new policies.

Question #2: Do these interim final rules require issuers in the individual health insurance market to offer children under 19 non-grandfathered family and individual coverage at all times during the year?

A: No.  To address concerns over adverse selection, issuers in the individual market may restrict enrollment of children under 19, whether in family or individual coverage, to specific open enrollment periods if allowed under State law.  This is not precluded by the new regulations.

For example, an insurance company could set the start of its policy year for January 1 and allow an annual open enrollment period from December 1 to December 31 each year.  A different company could allow quarterly open enrollment periods.  Both situations assume that there are no State laws that set the timing and duration of open enrollment periods.

Question #3: How often must an issuer in the individual market provide an open enrollment period for children under 19?

A: Unless State laws provide such guidance, issuers in the individual market may determine the number and length of open enrollment periods for children under 19 (as well as those for families and adults).  The Administration, in partnership with States, will monitor the implementation of the pre-existing condition exclusion policy for children and issue further guidance on open enrollment periods if it appears that their use is limiting the access intended under the law.

Question #4: How do these rules affect existing enrollment requirements in States that already require guaranteed issue of coverage for children under 19 in the individual market?

A: If a State requires continuous open enrollment or requires issuers to maintain an open enrollment period of a particular length or open enrollment periods of a particular frequency, then the State requirement will apply.  The State law is not preempted by any current federal requirements.

Question #5: “Premium assistance” programs allow States to provide payments to help people eligible for Medicaid and Children’s Health Insurance Programs (CHIP) enroll in private coverage.  Won’t the policy to ban pre-existing condition exclusions in new plans for children lead cash-strapped States to steer high-cost children into individual market policies for children as a way to limit their own liability?

A: Federal law prohibits Medicaid and CHIP from denying children coverage based on their health status.  Moreover, it limits the extent to which these programs can provide payment to support coverage in individual market policies.  “Premium assistance” programs in CHIP allow States to provide payment to private policies to cover children if doing so both protects children and is cost effective to the Federal and State governments.  Premium assistance is not designed as a strategy to transfer vulnerable children to individual market coverage.  The Administration will enforce its current policies on premium assistance and consider new ones if evidence emerges that children with pre-existing conditions are being diverted inappropriately from Medicaid or CHIP to private insurance plans that newly offer guaranteed issue to children regardless of their health status.

HHS will not enforce these rules against issuers of stand-alone retiree-only plans in the private health insurance market.

Question #6: Some issuers have expressed concerns about adverse selection from newly offering child-only health insurance on a guarantee issue basis, and have asked for clarifications of what they could do, consistent with the current regulations, to mitigate this concern?

A: A number of actions have been suggested by insurance commissioners and insurers to address adverse selection in child-only policies.  The following actions are not precluded by existing regulations:

  • Adjusting rates for health status only as permitted by State law (note: the Affordable Care Act prohibits health status rating for all new insurance plans starting in 2014);
  • Permitting child-only rates to be different from rates for dependent children, consistent with State law;
  • Imposing a surcharge for dropping coverage and subsequently reapplying if permitted by State law;
  • Instituting rules to help prevent dumping by employers to the extent permitted by State law;
  • Closing the block of business for current child-only policies if permitted by State law; and
  • Selling child-only policies that are self-sustaining and separate from closed child-only books of business if permitted by State law.

In addition, some States are considering legislation that would require individual-market issuers that offer family coverage to also offer child-only policies.  This approach could increase the options for families with healthy as well as sick children, and would lower the risk of adverse selection.  The Administration would welcome this and other State actions that ensure access to health plans by families with children and prevent adverse selection in the market.

Question #7: In some States with guarantee issue, to limit adverse selection, open enrollment periods are set for a particular time of the year, required to be used by all issuers, and, in some cases, are the only time when issuers can sell policies.  Would the Administration consider adopting such a policy?

A: As clarified earlier, issuers and States can already choose to use open enrollment periods consistent with existing regulations.  To require a uniform open enrollment period for child-only policies would require a change in the existing regulations.  The Administration would consider making such a change if it would result in issuers continuing to sell child-only plans.