Moving seniors and people with disabilities into Medi-Cal Managed Care

December 7, 2011
RE: Perspective of HIV Positive Medi-Cal Beneficiaries: Movement of Seniors and People with Disabilities into Medi-Cal Managed Care

Honorable Ladies and Gentlemen of the Legislature,

It is my pleasure to represent the views of Medi-Cal recipients living with HIV at this Joint Oversight hearing of the Senate and Assembly Health Committees on the movement of Seniors and People with Disabilities into mandatory Medi-Cal managed care. My name is Anne Donnelly and I am the Director of Health Care Policy for Project Inform, a national HIV and hepatitis C treatment and care advocacy organization located in San Francisco.

Project Inform has worked with its partners, medical providers, the Department of Health Care Services (DHCS) and the State Office of AIDS (SOA) to improve the implementation of the movement of seniors and people with disabilities into Medi-Cal managed care. However, the community at large, people with HIV and their providers are still confused and overwhelmed with a process that is unclear, appears to be subjective and arbitrary and has resulted in difficult disruptions in care for some of the most vulnerable patients.

The impact of the medical exemption request (MER) and continuity of care provisions and process has been somewhat minimized for people with HIV because of preparation within the community encouraging HIV providers to contract with Medi-Cal managed care plans. In addition, because HIV providers have, for the most part, been delivering coordinated and managed care through models developed with Ryan White Program (RWP) funding, they recognize the potential patient benefits of managed care, including the improvement of access to subspecialty care. HIV providers in general are willing to contract with Medi-Cal managed care; however, many currently are unable to contract and may have significant preparation work in advance of successful contracting. Many HIV providers have depended largely on RWP grant funding to develop medical homes for people with HIV. These providers need to develop the infrastructure and staffing necessary to bill, contract, and interact with managed care plans. In addition, most HIV providers act as primary care providers while providing specialty HIV care. Contracting and appropriate reimbursement can be a complicated and lengthy process depending on the plan policies.

However, in addition to having providers who are willing, if not able, to contract we also know that we have not heard from even a fraction of those affected because the HIV community is not as familiar with the excellent low-income legal services, such as the Neighborhood Legal Service of Los Angeles. Legal aid within the HIV community is sparse due to limited funding and not as conversant with Medi-Cal policy as its colleagues, so there are fewer people to turn to for help. An excellent example of the lack of assistance with understanding the implications of transition and the protections available to beneficiaries Dr. Elisa Nicholas’ testimony of the experience of HIV positive people, displaced by the movement into managed care from their HIV experienced provider, showing up at her pediatric clinic in Long Beach that doesn’t have the capacity to effectively serve them.

We hope that our experience can help to highlight the need for policy and process improvements for all seniors and people with disabilities who are making this transition. We believe, like our colleagues, that solving individual cases, while important, does not take the place of necessary systemic solutions. Solutions to these problems must recognize that seniors and people with disabilities are particularly vulnerable populations and their lives and health depend on access to quality care. Therefore, we believe the goal of this transition should not be to move as many into managed care as quickly as possible, but rather to ensure the continuity of essential care, based on the treating provider’s expert opinion, during this transition process and also to provide a guarantee of the time and support necessary to make a safe and healthy transition.

Medical Exemption Requests (MERs)
One provider shared with me prior to this hearing that they felt that the system had been set up for them to fail in securing continuity of care for their clients.

While some might feel that is overstated, it is clear that the policies regarding both MERs and continuity of care were not clear or sufficiently distributed prior to the transition, have apparently changed midstream and remain unclear and inconsistent.

In regard to medical exemptions from mandatory managed care, it was our understanding prior to the transition, an understanding we believe was supported by the statute, the MER form, and confirmed by Health Care Options in public meetings, that people with HIV and other complex medical conditions would be allowed a medical exemption if their current provider was not contracted with a plan.  Providers submitted MERs in July with just the ICD9 code for HIV disease, which were approved. In August and September, the same form and same information resulted in some approvals but some denials. When the cases were brought to DHCS, we were told verbally that the complex medical condition alone was not sufficient for an approval but that “medical instability” needed to be established. At the time we were also told that there was no criteria or protocol for medical instability and that the review team at DHCS did not have experience in HIV or other complex medical conditions. After several meetings with DHCS, it was established that more information was needed from the provider, but this was not until one to two months after the transition process began.

There are still no clear criteria or protocol that establishes medical instability and MER approvals and denials appear to be arbitrary.
Some of our providers have been told that they need to submit progress notes, medication logs, problem lists, and appointment history but even with the submission some apparently similar cases are approved while others are denied. Other providers report that they have submitted only the MER form with multiple ICD9 codes and no supporting information and their MERs are routinely being approved.  It is unclear to us how approvals and denials are determined in strikingly similar cases.

Case example: “Andy” has an AIDS diagnosis, Hepatitis C, active methamphetamine use and bipolar disorder. His viral load is detectible and his t-cell count is low. He is physically and psychologically fragile and has been seeing the same provider for several years. His provider fears he would be lost to care if forced to see a new provider right now.

“Bianca” is a transwoman who has taken street hormones in the past. She is living with AIDS and clinical depression. She is currently homeless with no place to receive mail. She also struggles with hypertension.

Why would one of these individuals be approved for a MER, while another one was denied?
It is also unclear what criteria are being used to override the treating physician’s expert opinion on the need for a MER. 

Case example:  “Harold” has been living with HIV for close to 20 years; he has been seeing the same provider in the East Bay for 15 years. Harold recently moved to San Francisco to take advantage of a more economical living situation. Harold lives with HIV, diabetes, neuropathy, bipolar disorder and severe skin conditions that require frequent surgical intervention. Harold’s provider was recently promoted to a high level non-clinical position at his hospital and continues to see only a handful of patients, including Harold, due to his concern that they can’t successfully transition providers at this point in time. Harold’s HIV is resistant and complex to treat, however, his provider’s primary transition concern is Harold’s bi-polar disorder which has made the provider/patient relationship necessary to support rigorous adherence to care and medication challenging to establish and maintain. In spite of a MER submission in July and the provision of additional information, Harold’s MER remains pending.

This appears to be a clear example of the DHCS review team second guessing a treating provider’s expert opinion regarding the need for an exemption at this time. It is unclear what criteria they are using to delay the approval of Harold’s MER.

MERs are being denied because of technical errors.
One provider was told that the MER was denied because the address, which they had used on previous forms, was incorrect. Another reported being told the MER was denied because the provider signing the form was not a part of the managed care plan, which appears nonsensical.

Technical errors should not result in a MER denial that could endanger a beneficiary’s continuity of care.

There is insufficient communication and support to successfully complete the MER process.

One provider reported being told that several MERs they submitted were denied because the follow up information that was requested was not sent. The only communication the provider saw was notification that the MERs were still pending. This same provider had responded to requests for follow up information on other MERs.

DHCS has a responsibility to make reasonable efforts to ensure that a request for additional information is received and understood before denying a MER. Providers are overwhelmed and confused by these processes and it should not be assumed they are refusing to supply additional information.

DHCS has told us that consumers also receive information regarding the status of their MER. However, providers are reporting that their clients have not received any information regarding their MER.

Consumers need to receive information on the status of their MER in order to monitor the request and assure, if necessary, that their provider is aware of requests for additional information.

There is no clear MER troubleshooting procedure for providers or patients outside state hearing requests.
The only cases we have been able to get assistance on are those we have taken directly to DHCS. Not all providers and very few consumers would have the contacts necessary to take these cases forward. The state hearing process is very burdensome, especially for those in communities with limited experience with the appeals process.  The advocates that have been able to take denials forward to state hearings report that it is a very time intensive process.  No one living with HIV has successfully taken a denial to appeal because there are few, if any, advocates in the HIV community familiar with the processes and clinic administrators are completely overwhelmed and unable to help.

Continuity of Care Provisions:

The information and education regarding continuity of care provisions has been inadequate for patients and providers.
The only information that has been sent out regarding continuity of care provisions was sent in an All Plan Letter. Providers in the HIV community even now have little or no understanding of the provisions. As far as we know, no information has been sent to beneficiaries and although FAQs were posted on the DHCS website in October, they were only translated into the Medi-Cal threshold languages in late November. We are unaware of any alternative formats for these FAQs. The beneficiaries we have had contact with are unaware of the provisions.

It is also unclear whether continuity of care provisions extend cross county. Although DHCS has assured us that plans can contract and extend continuity of care across counties, plans are not uniform in their provisions. The San Francisco Plan has refused to contract with providers in Alameda County. This is an issue for people with HIV as many seek care out of county. Sometimes it is because they have a long term relationship with a provider whom they have grown to trust, sometimes it is due to a fear of discrimination and rejection within their own community and sometimes it is because the out of county provider treats a specific population, such as transgendered people, and the beneficiary trusts both the provider experience and the comfort level in the clinic.

Case example: “Tony” is a young man who came into HIV at the age of 20. He was shut down and in denial about his HIV status. Although he was very immune suppressed with a virus that was resistant to three classes of medications, he didn’t feel sick. Because of his age and his lack of apparent symptoms, it took months of rapport and relationship building to create the level of trust necessary to support Tony in adhering to a rigorous daily treatment regimen. Once Tony agreed to engage in treatment he was able to lower his viral load and increase his t-cell count, leading to successful viral suppression. He lives outside the county where he receives care and travels to the clinic every six weeks because he won’t go to another provider.

Tony can’t afford to take a chance on uneven continuity of care provisions across county lines.

Not all plan contractors understand the continuity of care provisions.A Los Angeles provider reported that although LA Cares understood the provisions, the Independent Practice Associations where their clients were defaulted originally refused to honor continuity of care provisions. The provider felt that it was only because they were in the process of contracting with LA Cares that they had the relationships necessary to final secure continuity of care for their patients.

Even if continuity of care for patient visits is secured, there has been great difficulty in achieving comprehensive and effective continuity of care.
Providers have had great difficulty and many have still not been reimbursed for ancillary care such as:

• Laboratory tests, including viral load, CD4 count, and resistance tests that are all necessary to monitor HIV disease and plan effective treatment protocols;
• Diagnostic imaging for such things as spinal pain, which could be associated with co-morbidities;
• Chest x-rays for such things as pulmonary Hepatitis C and;
• Referrals for cardiology, nephrology, and neurology, all common needs for people with HIV due to side effects from long term HIV treatment.

Recommendations:
Based on the experiences outlined above, we provide the following recommendations in the spirit of improving the policies and procedures that should safeguard the health and lives of people living with HIV and other complex conditions.

 1.       The MER process must be fully vetted with stakeholders, clarified and uniformly applied. It must also be widely distributed to consumers and providers.

1. The process, inclusive of date for submission and information provision requirements, should be published and distributed appropriately.
2. The definition of “medical instability” should be clarified and factors such as psycho-social issues, multiple morbidities and providers, length and quality of provider/patient relationship, and risk for disruption in care and/or loss to care during a transition need to be taken into account.
3. Reviewers should have clear criteria and a specific protocol to use in reviewing MERs.
4. The MER process should be evaluated for uniform application.
5. e.       Until such time as the policies are clear, usable and uniformly applied, DHCS must rely on the treating physician’s expert opinion regarding the need for a MER.

 2.       DHCS needs to improve communication and support for the MER process.

1. If a provider fails to respond to a request for additional information, DHCS should make a reasonable effort to contact the provider before a denial.
2. Consumers and providers should both receive information on receipt of a MER and regular status updates.

 3.       MERs should not be denied on technicalities without due effort made on the part of DHCS to correct the information.

1. Due effort should be defined and documented.

4.       Plans should be required to contract with out-of-county providers if necessary for continuity of care purposes and assuming the providers meet the remaining provider criteria.

1. DHCS should issue a clear policy and make it publicly available.

5.       There must be more support for transition if a MER is denied to minimize disruption to care and treatment and ensure a safe and effective transition.

1. DHCS should consider a reasonable transition period, allowing beneficiaries to stay with their fee for service (FFS) provider and charge the plan with working with the provider and the beneficiary to ensure a safe transition.
2. DHCS must enforce the MMCD plan letter that states refills will be honored by all plans. If the drug is not on the formulary, it must be offered within 24 hours and maintained while a treatment plan is determined with the provider.

6.       We concur with recommendation #2 of the Neighborhood Legal Services that FFS must be maintained pending a MER and the appeal of a denial.

7.       Continuity of Care Provisions Need to be Clarified, Expanded and More Widely Distributed

1. DHCS has to give consumers notice that they can stay with their current regardless of whether their doctors are willing to contract with the managed care plan.
2. DHCS must also do a better job of ensuring that all IPAs and FFS providers understand the continuity of care provisions.
3. DHCS has to enforce the rules that the plans must meet their continuity of care obligation and ensure that all contracted IPAs understand the provisions.
4. The obligation for the plan to offer FFS or manage care rates must be enforced.
5. DHCS must make clear that continuity of care provisions apply not only to patient visits but to ancillary care such as labs and imaging, referrals to necessary subspecialty care and drugs.

8.       We concur with NLS 5^th recommendation regarding procedural improvements.

Lessons Learned For Health Care Reform Preparation
The goals of the hearing are three fold: 1.) to provide and update on the status of current enrollment; 2.) to learn from this process in order to make effective future policy decisions; and 3.) to examine lessons learned from the waiver process for health care reform preparation and implementation. Therefore, I also want to focus on the lessons learned for health care reform preparation. In order to understand the lessons in the context of the delivery of HIV care it is important to provide some background on HIV disease and the current HIV system of care.

Background
It is widely understood that we have the tools to end the HIV epidemic if we have the political will to implement them in decisions regarding care and prevention delivery and funding. If people have access to reliable care and treatment and the support necessary to adhere to both, viral load can be suppressed for almost all individuals. If there is success in suppressing viral load to undetectable levels, individuals can be expected to enjoy good health outcomes and a normal life span. In addition, it will be almost impossible for positive people to transmit HIV disease to others.

However, the current system is failing people with HIV. An estimated 21% of people with HIV do not know their status. Only 75% of newly diagnosed people are able to engage in care in the first 6 to 12 months after diagnosis, while 80 – 90% engage within 3 – 5 years. Multiple cohort studies show that 25 – 44% of people in some settings are entirely lost to care. Summaries of these studies have estimated that 50% of people with HIV are not in regular care and do not have reliable access to medications. And only 28% of people with HIV who are in care have achieved the viral suppression necessary to achieve optimum individual health outcomes and dramatically reduce the risk of transmitting the virus.

We also know that almost 50% of people living with HIV who are in care depend on Medicaid. Thirty percent are uninsured and depend on Ryan White services. Of those who have Medicare coverage, over 80% dual eligibles. Initial California estimates indicate that about 70% of currently uninsured Ryan White clients in CA will qualify for Medi-Cal expansion in 2014.

People with HIV and their providers face a unique challenge to realize the promise of significantly expanded access to health care coverage under health care reform. Unlike most uninsured people who will gain coverage options for the first time, uninsured people with HIV will be moving from an expert system of care developed under Ryan White to new systems of coverage, including Medicaid and plans offered through the State Health Benefit Exchanges. Because Ryan White funding is governed by payer of last resort rules, it can only provide services to those who do not qualify for other types of creditable coverage. These rules will force RWP clients and providers to enter new systems as soon as they are available in order to maintain care.

HIV positive people who are in care already have trusted and experienced providers. Studies show that provider and patient relationships, trust, and communication are key factors for successful engagement and adherence to care and treatment.  Many people living with HIV also have multiple and complex care need due to co-morbidities, such as hepatitis C, mental health and/or substance use disorders as well as significant support needs such as stable housing and peer support that can’t easily be replicated at any care site. HIV providers have developed expert, coordinated and effective care models that improve health outcomes and reduce costs of treating HIV disease. In order to minimize disruption to care and loss of HIV expert medical care infrastructure it will be necessary to ensure that HIV positive people have the information, education and support they will need to successfully transition to new more complex systems of care and HIV care providers receive the technical assistance and capacity building necessary to successfully engage with broader systems of care.

The lessons we have learned from this transition that should inform our preparation for health care reform include:

1)      There is no one agency charged with ensuring a successful transition to new systems of care for people with HIV and their providers in 2014.
a)      Success will require enhanced collaboration and communication between the DHCS and the SOA in the Department of Public Health (DPH).

b)      We request that DHCS detail a high level liaison between DHCS and SOA to ensure adequate communication and planning.

2)      Transition needs careful planning, technical assistance for providers, navigation assistance for consumers, and widespread education.

a)      Moving from one system to another can easily disrupt care.
b)      The new systems of care are more complex and less HIV centered then previous systems so assistance will be required.
c)       HIV providers will be moving from a grant system to new systems that require additional infrastructure and capacity development and provider lower reimbursement.

3)      Advisory panels must include HIV care systems expertise

a)      HIV care system expertise is necessary on the stakeholders advisory committee, which will continue to provide input to DHCS for health care reform planning.
(1)    It is clear that there is little HIV expertise at DHCS and because of the unique transition needs, it is critical to have people with HIV background on key advisory committees.

 4)      Strong, clear, and uniform consumer protections are essential

a)      Ryan White is payer of last resort; once any new system of creditable coverage is in place people with HIV will have to transition to the new system to receive health care services.
b)      Even short disruptions in HIV can lead to negative health outcomes as well as increased risk of transmission of HIV.
c)       Protections need to be ensure that HIV positive people are supported in continuity of care with current providers, where possible, and if not possible to experienced providers.
d)      DHCS must develop continuity of care policies that protect the consumer first and allow the time and support necessary to make effective and safe transitions.

Thank you for the opportunity to present our perspectives on this critical transition as well as the lessons we have learned in preparation for health care reform. We believe that we are moving toward a mutual goal of providing more coordinated and better managed care for Californians with HIV and other vulnerable individuals. We also appreciate the opportunity to discuss the unique challenges people with HIV and the HIV system of care face as we move toward the promise of health care reform and coverage expansion. During all these transitions, it is critical to ensure that we place the safety and health of people with HIV and others who depend on quality health care at the center of all health care policies.

There are many people with HIV and others who can’t successfully navigate upcoming transitions without assistance. It is unacceptable to put the burden of successful transition on individuals who are sick, often with multiple co-morbidities and complex psycho-social issues, or on overworked safety net providers.

Policies and procedures must be carefully developed with stakeholder input, clear, uniformly applied, and widely distributed in multiple formats. Support and communication are essential to ensure that policies are fairly and safely applied.

We also thank the Legislature for the oversight of these critical transitions in health care for some of the most vulnerable Californians and encourage you to continue this important role. From the perspective of people with HIV, we know that we have the tools to dramatically improve the health of all Californians living with HIV and ultimately to end the epidemic. Appropriate health care policy and its implementation is an essential component of our fight against HIV in California.

Sincerely,
Anne Donnelly
Director of Health Care Policy
Project Inform